Are There Any Decent Specialists Out There?

Since my last post I have become enlightened in several ways, so this post will touch on a few different topics.

After the holidays I was hit with a change in my physical symptoms which included excessive fatigue, an increase in daytime sleepiness, drops in my blood pressure, and just a general feeling of lethargy. At first I thought it was due to over-exertion during the holidays. I have had plenty of down time since then, and these changes in symptoms have only improved partially. Adding more salt to my diet has helped with my blood pressure immensely, but the other symptoms are not as improved as I would have hoped. I am now wondering if this is just another new phase or change due to PD that has entered my life that I will just have to adjust to. I will be discussing this with my MDS next month.

I received a comment from Diane on my previous post, and I have exchanged a few emails with her. Diane has a diagnosis of Multiple Sclerosis, and she has a great site that I have added a link to.

Although I write primarily about Parkinson related diseases and dealing with the medical community, these recent emails with Diane reminded me that my main purpose for starting this blog, was to try to help others who are struggling with the medical community, regardless of the type of chronic illness. I was further reminded that in the very beginning of my own search for a diagnosis, I was told that there was a possibility that I might have Multiple Sclerosis, so I have done quite a bit of research in the past on that disease. From what I have read, it is not uncommon for a patient with PD, especially females, to originally be told they may possibly have MS. Additionally, from my own experience, it took approximately three years to completely rule out MS.

Multiple Sclerosis and Parkinson’s Disease are both neurological conditions. I know that in theory, a Movement Disorder Specialist deals with the diagnosis and treatment of PD, and a Neurologist who specializes in Multiple Sclerosis deals with the diagnosis and treatment of MS. I have been to both types of specialists. The neurologist that was originally recommended to me by the MS Society was wonderful, and he did finally rule out MS. On the flip side, I had been examined by a Movement Disorder Specialist who was highly recommended in the Parkinson’s community, and I was told that I was too young to have PD. My own GP and a general Neurologist did more for me during the last two years, than the multitude of specialists that I have come in contact with, not including my current Movement Disorder Specialist, who is awesome. In my experience, the “extra” training that a specialist receives for specific neurological conditions, does not guarantee that a specialist will give you an accurate diagnosis. Additionally, a patient may get lucky when they see a specialist that is referred by specific organizations, or they may be out of luck. I have experienced both scenarios.

So, I will now get to the point. I believe that the best referral for specialists, or any other type of doctor, comes directly from other patients. In earlier posts I mentioned that I had added a link section for specialists that other readers would highly recommend. I began that section by adding the link to the Parkinson’s and Movement Disorder Institute, which is where my Movement Disorder Specialist practices. This section is not limited to Movement Disorder Specialists or Parkinson’s Disease. If you have a general neurologist who diagnosed and treats your neurological condition, who you would highly recommend, then please let me know. If you have a neurologist who specializes in Multiple Sclerosis, but diagnosed and treats your non-MS neurological condition, then get that specialist on the list. My goal is to eventually have at least two neurological related specialists that come highly recommended by you, for each state. These are the specialists, who not only have the knowledge, but also have the desire, concern, and willingness to help both the diagnosed and yet to be diagnosed. These are the specialists that think out of the box, especially since many patients with neurological conditions do not initially fit neatly into a box of predetermined criteria for diagnosis.

Since I began blogging I have learned so much from all of the people I have come in contact with, through their stories and experiences. With each new story I read, I gain new knowledge and insight, not only about Parkinson’s Disease, but about the similar physical, mental and emotional struggles that neurological conditions in general have in common. I just want to say a big “thank you” to those I have met through your stories and to those who I have not met, whose stories I have yet to read. Together, we can all make a difference just by reaching out through our words and our knowledge that we try to share. We are a great support for those who already have a diagnosis, but may even be a greater support for those still seeking a diagnosis. I found this to be true during my diagnosis process. With that being said, let me say once again, if you have a great specialist, please let me know.

Communicating With Your Physicians - Part 2

In part one, I addressed the importance of effective written and verbal communication when communicating with a Primary Care Physician or Specialist. I gave examples of various situations that often arise and the type(s) of communication I normally choose to utilize for those situations. Additionally, I outlined some of the benefits and protections that the patient gains through effective verbal communication, and to a greater degree through written communication.

In part two I am going to offer suggestions on how a patient can be more effective in both verbal and written communication. Keep in mind that effective communication is only beneficial if the patient has a patient friendly physician.


Verbal Communication

I will outline below the key elements of verbal communication that are particularly important when communicating with physicians, and I will include examples.

1. Prior to any visit with a physician, the patient should make a list of all issues that he / she wants to address during the visit. Example: new symptoms, changes in existing symptoms, medication changes, alternative treatment options, etc. This will insure that the patient does not leave anything out due to faulty memory. Obviously, there will not be effective communication at all, if the patient cannot remember what he / she wanted to discuss.

2. Listen to what the physician is communicating, more than how he / she is communicating. Example: A physician may speak in a tone that may give the impression that the physician is skeptical of or not interested in a patient’s medical situation. That may be the case, or it may be just the way that the physician speaks, and is not a reflection on his / her actual opinion. If a patient moves into a defensive mode because of the manner of speaking, he / she may miss the information that the physician is trying to provide. Rather than concentrating on “how the words” are spoken, the patient needs to maintain his / her focus “on the words” that are being spoken.

3. The patient needs to make sure that he / she fully understands what the physician is communicating. Example: If the patient is unclear of something the physician just said, the patient can repeat back to the physician (paraphrase) what the physician just said. The patient should then ask, “Is that correct?” Once the physician confirms that the words the patient repeated back to him / her are correct, the patient can ask additional questions if further clarification is necessary.

4. The patient must be willing to state his / her position or opinion in a polite but firm manner, even if it is not in agreement with the physician’s position or opinion. Example: The physician tells the patient that it is not necessary to order an MRI of the lower back, although the patient has had radiating back pain for over a year. An X-ray two months prior did not produce the cause. This patient has done research and now understands that the type of pain he / she has been experiencing could be caused by a herniated disc or some other soft tissue injury, which will can not be seen on standard X-rays. The patient should communicate to the physician the information he / she believes to be relevent, remind the physician of the duration of time the pain has been present, and firmly state that it is his / her understanding that an MRI of the lower back is the best way to determine the source of the symptoms. By making a firm, educated statement, the physician is now obligated to provide specific reasons for his / her position. On the other hand, the physician may now concur with the patient’s educated statements and request the MRI. (I have had both scenarios occur.)

5. The patient must communicate in a clear, descriptive, and detailed manner. Example: A patient is seeing his / her Primary Care Physician for an abdominal problem and says, “My stomach hurts when I eat, but it does not hurt every time I eat”. Although a physician should ask multiple questions in response to this vague statement, this may not happen. This vague statement leaves the option open for a physician, especially one who is running behind schedule, to make a quick diagnosis of convenience, rather than take the time to extract more information from the patient.

The patient with the abdominal problems must clearly communicate the following information:

1. Type of pain (burning, stabbing, constant, intermittent, etc.)
2. The specific portion of the abdominal area affected by this pain
3. When the pain occurs (after meals, before meals, before bed, etc.)
4. How often the pain occurs (after every meal, daily, weekly, etc.)
5. Conditions that contribute to the pain (types of food, time of day, exercise after a meal, exercise prior to a meal, etc.)

By providing clear, descriptive, and detailed information, the patient enables the
physician to offer a more accurate initial differential diagnosis. It also provides enough information for the physician to quickly determine what type of diagnostic tests should be done, as well as a possible initial treatment plan to ease symptoms. Communicating in this manner saves time during the visit by limiting the number of back and forth questions and answers. This is especially important when dealing with a physician who is running behind schedule and is trying to limit the time spent with each patient in order to catch up.

6. A patient should communicate with emotion and feeling, but should not react emotionally. (This is easier said than done.) Example: If the patient is told something by a physician that he / she disagrees with, the patient can verbally respond in a passionate manner in order to get a point across or for emphasis on that topic. However, if the patient becomes visibly angry or bursts into tears, this can be very detrimental, especially if the patient is being told that his / her physical symptoms are being caused by a mental health disorder. These types of emotional reactions or outbursts will only serve to strengthen the physician’s opinion that the symptoms are mental health related rather than being caused by a physical medical condition. Even if mental health is not in question, a physician may be less inclined to want to work with the patient, if the patient is unable to keep emotional outbursts under control.

7. Before allowing a visit to end, the patient needs to inquire and understand the follow-up protocol, as well as a date for the follow-up. Example: A patient is trying a new treatment for a chronic condition. Any new treatment should include a follow-up appointment, especially if associated with a chronic condition. The patient should not allow for an open-ended statement such as, “Try this and call me if there are any problems”. Because the patient has a chronic condition, there should already be regularly scheduled follow-up visits in place. If this is not the case, the patient should insist on a follow-up visit, including the date the follow-up would take place. Depending on circumstances, at the bare minimum, a telephone follow-up should at least be scheduled.

8. Prior to any appointment, a patient should research medical terminologies associated with the chronic condition, as well as the medical terminologies often associated with the field of medicine that the chronic condition falls under – Example: A patient has been given a differential diagnosis of Parkinson’s Disease and is seeing a Movement Disorder Specialist. During the visit the patient should use the most accurate medical terminologies when discussing
symptoms, previous diagnostic testing, medications, etc. This will allow the physician to get a more accurate picture of what the patient has been or is currently experiencing. The greatest benefit of using and understanding the correct medical terminologies is that it demonstrates to the physician that you have a firm understanding of not only the differential diagnosis, but of other associated conditions. Because the patient has educated himself, it makes it more difficult for a physician to offer a diagnosis of convenience or statements contrary to known facts about the condition.


Written Communication

I will outline below the key elements of written communication that are particularly important when communicating with physicians, and I will include a sample written correspondence.

1. If the written correspondence is in letterform, which is my preference, always include the date, name of physician, physician’s address, subject of correspondence, and correspondence delivery method.

2. In the opening paragraph, provide a short, detailed summary that includes the purpose for the correspondence. If it is a summary being sent to the patient’s Primary Care Physician, in reference to a visit with a specialist, include the specialist’s name, location, and the date of the visit. Likewise, if it is in reference to concerns with or changes in a patient’s medical condition, the date of the patient’s previous visit and the specific concerns or changes since that visit should be included.

3. In the body of the correspondence, provide the details clearly. It is particularly important to use appropriate medical terminologies when corresponding in writing. Each paragraph should be limited to one subject, concern, symptom change, etc. Too many subject matters in one paragraph can cause confusion and may promote a less clear picture of the patient’s purpose for addressing the subjects.

4. Once all individual subjects have been addressed, the next paragraph should include either a summarization, if known, of future visits with a specialist, treatments, goals, or a question on how the physician would like to proceed based on the information in the correspondence.

5. The final paragraph should include a statement of thanks to the physician. A sentence that states that the patient looks forward to hearing from the physician should be included. This type of statement lets the physician know that you expect some form of response to the correspondence.


Sample: Written Correspondence to Primary Care Physician

September 24, 2007

Dr. Physician’s Name
1111 Any Street. Suite 1
Any City, Any State, Zip

Re: Patient’s Name – New Symptoms and Medication Concerns

Via Facsimile: xxx-xxx-xxxx


Dear Dr. Physician’s Name

Since my last visit with you on July 1, 2007, I have had two new symptoms develop, that I believe relate to my condition. I am now experiencing insomnia and multiple awakenings during the night. Additionally, the medications I am taking for this condition are not controlling my symptoms as well as they were. As you may recall, I am taking medication A and medication B for the last six months with positive results up until two weeks ago.

Within the last two weeks, I have had multiple episodes of insomnia. Most evenings I got to bed at 10:00 P.M. It usually takes no longer than twenty minutes to fall asleep. I have had difficulty falling asleep on ten of the last fourteen nights. On those evenings it has taken anywhere from two to four hours to fall asleep. I have had no recent lifestyle changes or stressors that could be contributing to this problem.

The multiple awakenings during the night began to occur at the same time as the insomnia. This now appears a nightly occurrence. On most nights, I wake up approximately six times per night. Of those awakenings, only one can be attributed to needing to use the bathroom. The rest appear to have no known cause. Again, I have no recent lifestyle changes or stressors that could be contributing to this problem.

For the last six months, medication A and medication B have been sufficiently controlling most of my symptoms. I have been taking both medications every four hours as directed. Two weeks ago, I noticed that my symptoms would return three hours after taking the previous dose. As a result, I now have one hour per every four-hour period that I must deal with the symptoms at their maximum levels. This has caused a great deal of hardship for my family and me. This change in effectiveness has been consistent throughout the entire two-week period.

At this time, I think it may be necessary to return to the specialist in order to address the new symptoms and medication issues. The onset of new symptoms appears to correspond with the onset of medication issues. Historically, it normally takes four to six weeks before an appointment is available with the specialist. If this is the case currently, should I make an appointment to see you in the interim? If you do not believe that an appointment with you is necessary at this time, then I would like to request that a prescription sleep aid be called in to my pharmacy. If it enables me to get a few more hours of sleep each night, I will be better able to handle the four to six week wait to see the specialist. I also believe I can handle dealing with my symptoms returning every four hours. Additionally, if it is possible, I would appreciate if your office could expedite the referral to the specialist.

Please let me know how you would like to proceed. I look forward to hearing from you. As always, thank you in advance for your assistance.

Sincerely,

Patient With A Plan


This correspondence provides clear and accurate information to the Primary Care Physician with respect to the patient’s immediate concerns. Additionally, it provides a potential temporary solution for those concerns, until they can be addressed appropriately. In the manner written, this correspondence reflects the patient’s comfort level with the physician. The patient does not hesitate to state the need for a referral to a specialist, nor does the patient hesitate to offer input for an immediate course of action. A good doctor / patient relationship is evident, as well as the patient’s previous experience in dealing with the changes that can occur with a chronic condition.

Although personal information was not included, this correspondence represents my personal experience with this scenario. More often than not, my Primary Care Physician will call me, rather than have me come in for an appointment. This of course depends on the severity of the situation. Additionally, he has often been willing to call in prescriptions when situations warrant, as long as it does not pose a risk to my health. Again, because I have a good relationship with my Primary Care Physician, which was built through effective communication, there is a mutual understanding that my healthcare is a team effort.

The willingness to correspond directly with me outside of an office visit is something that is not common in the medical world today. In fact, this is the first Primary Care Physician that I have met, who goes above and beyond with respect to communication. There is no guarantee that a patient who communicates effectively will have the same exact results. However, the patient who communicates in an effective manner, both verbally and in writing, has a better chance of building a good relationship with his / her physician. That relationship, along with effective communication, provides the patient with the security that is essential when dealing with any chronic condition.

Communicating With Your Physicians - Part 1

Communication between patient and physician is an important factor in the diagnosis process. At one time, I thought that verbal communication was the only form of communication necessary, when communicating with my physicians. I have since changed my opinion.

There was a time when I only saw my Primary Care Provider for an annual exam. I was normally a healthy person, and I was not prone to automatically seeing a physician for minor illness. Therefore, a quality doctor / patient relationship was not established with my primary care physicians during my healthy years.

Once I began having medical problems, I went through two Primary Care Physicians, prior to finding a patient friendly physician who was willing to work with me. Since I had become a frequent visitor to my Primary Care Physician’s office, the development of a good doctor / patient relationship was able to take root. Familiarity, as well as communication during appointments, helped to solidify a good working relationship between us. Unfortunately, he retired prior to my symptoms progressing enough for him to render a differential diagnosis.

My current Primary Care Physician inherited me because of my previous physician’s retirement. In the beginning, I was not sure that he and I would be a good match for an acceptable doctor / patient relationship. However, I did not throw in the towel. One afternoon we engaged in an intense verbal discussion by phone, which turned the potentially disastrous doctor / patient relationship into probably the best doctor / patient relationship I have had to this date. Clear communication and some human emotion had turned this relationship around.

While I was a patient of the now retired Primary Care Physician, I incorporated written communication into my doctor / patient relationship. As it became clear that I was potentially dealing with a chronic illness, I wanted to insure that every symptom I experienced was communicated and documented. My previous Primary Care Physician was very thorough at taking notes, but for my own peace of mind, I wanted my symptoms and other health related concerns, documented in writing from my perspective as the patient. Additionally, not all physicians are thorough when taking notes, and there are often key pieces of information that are left out. Therefore, when a patient brings up a previously discussed symptom at a future date, and if that symptom never made it into the notes, the physician is very likely not to recall ever discussing the symptom. Physicians see so many patients, that it is impossible for them to remember every word of every verbal communication with every patient.

It is now my standard practice to communicate with physicians verbally, as well as in writing. The type of circumstance dictates whether I utilize verbal communication, written communication, or both forms of communication. The following is a list of various scenarios, and the type of communication I will normally use:

1. Office visit with Primary Care Physician for minor illness or basic follow-up appointment – verbal communication

2. Initial visit with a Movement Disorder Specialist or other specialist – verbal and written communication. If time permits, I send a letter of introduction and copies of my medical records, prior to the appointment. I also make sure to bring backup copies with me to the appointment, in the event that my letter and medical record copies somehow did not make it into the physician’s hands.

3. Follow-up visit with a Movement Disorder Specialist or other specialist – verbal and written communication. Prior to the appointment, I write a brief summary including symptoms, changes in symptoms, medication problems, etc., to give to the specialist during the appointment. This summary not only helps me to remember the topics I want to verbally discuss during the appointment, but also serves as a permanent record that the information was provided to the physician on that date.

4. Non-office visit follow-up with Primary Care Physician after seeing a specialist – verbal and written communication. Following a visit with a specialist, I write an informational short report detailing the visit. This includes information pertaining to symptoms, treatment, topics discussed with the specialist, and future visits. Additionally, I include a copy of any written communication I had given to the specialist. I then fax these items to my Primary Care Physician’s office, and call to make sure they were received.

5. New concerns, which may or may not be related to my spinal condition or Parkinsonism, that I want my Primary Care Physician to be aware of – verbal and written communication. I call my Primary Care Physician’s office and provide a brief description of my concerns to his office assistant. I then write a more detailed summary of my concerns and fax it to my Primary Care Physician’s office. Again, I then place a call to his office to confirm that my fax was received.

Why do I now communicate with physicians both verbally and in writing?

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Verbal Communication

Verbal communication is obviously the primary form of communication used during a visit with a physician. During a visit with a specialist, a patient verbally describes his / her symptoms, duration of symptoms, differential diagnosis, diagnostic tests performed, and current treatment(s) to date. Likewise, a physician may verbally ask questions for clarification, explain his / her findings after examining the patient, present a need for further diagnostic testing / evaluation, and render a preliminary diagnosis with a treatment plan. A patient will normally be able to ask questions, in order to make sure he or she fully understands what the physician has said. Even if the specialist does not render a diagnosis during the visit, if the verbal communication is adequate, the patient will understand the physician’s course of action necessary to assist with the diagnosis process.


Written Communication

I have found that written communication is an important tool, especially for the patient who has an undiagnosed chronic condition. Additionally, for patients who do have a diagnosis, written communication is a great way to keep your Primary Care Physician, as well as your entire team of physicians, informed on any changes in your condition, in between appointments. Aside from and including some of the situations that I have previously listed, here are a few examples of the benefits of establishing written communication with your physicians:

1. Patient provided written documentation of symptoms gives an exact description and complete information that leaves little room for misinterpretation. Verbal communications have the potential to allow incorrect interpretation and potentially incorrect note documentation with respect to the patient’s symptoms. Patient provided written documentation eliminates these issues, because it is the patient’s accurate, first hand account that can be added to the patient’s chart for future reference by the physician.

2. Patient provided written documentation of changes in the chronic illness helps in two manners. First, if it is provided to a physician during a visit, it gives an accurate, first hand account of those changes. Again, a patient can request that the documentation be added to the patient’s records / chart. If the patient is in-between visits, he / she can fax the written account of the changes to the physician’s office. This allows the physician to determine whether or not the issues need to be addressed immediately, or if the issues can be addressed at the patient’s next appointment. I have found that my Primary Care Physician will often call me to discuss my correspondence, and then he will determine the necessity for an earlier visit.

3. Patient provided written documentation provides security for the patient. In my experience, there are times when a physician may not recall a specific issue of a verbal conversation with a patient, and may not have taken detailed notes of that conversation. For example, a patient may be at an appointment and wants to talk about a symptom that had been discussed six months ago. The patient goes on to describe changes involving that symptom. The physician states he / she does not recall discussing this particular symptom and it is not noted in your patient file. In this scenario, a patient may then remind the physician of the previous verbal conversation and can offer to provide him / her with another copy of the written documentation. Providing written documentation to your physician and having it added to your patient file provides the patient the security of knowing that there is an accurate record of any concern, new symptom, medication issues, etc. in the physician’s possession.

Another aspect of security provided to the patient who provides written documentation, is that it tells the story of your “history” with respect to the diagnosed or undiagnosed medical condition. This history becomes a great asset if the patient applies for permanent disability through Social Security. When the Social Security Administration sends out a request for your medical records, your written documentation / correspondence with your physician, can assist in establishing degree of disability, progression, length of chronic illness, etc. It also provides evidence that the medical condition causing the disability has existed for an extended period of time, and it is likely to continue.


Here is my personal example of how written documentation saved me from an incorrect differential diagnosis that could have potentially caused an enormous delay is my search for a diagnosis. I have written of this previously, but it deserves additional attention at this point.

When my symptoms progressed to a point where every aspect of my daily life was affected, I made an appointment with my Primary Care Physician. My physician had previously not observed most of my symptoms, due to their intermittent frequency in the beginning. Being the master procrastinator that I am, by the time I finally went to see my physician, my symptoms were not only constant, but also profound. The most prominent features were my extremely slow walking pace and the quality of my speech, which was low in volume and slow. By this time, I had virtually no facial expressions or bodily animations when speaking.

When my physician saw me in this condition, he was shocked. After speaking to my husband and me and performing an exam, he stated that I was possibly bi-polar. He also did not recall ever hearing about these symptoms before this particular visit. My husband was with me for this appointment, and he began to explain to my physician that my symptoms reminded him of his mother, who had been diagnosed with Parkinson’s Disease prior to her death. He also let my physician know that he had never observed any signs of depression, bi-polar disorder, or any other mental health related condition in the six years that he has known me. My physician agreed to prescribe Sinemet, which I still take today. He also believed an appointment with a Psychiatrist was needed.

That afternoon someone from my physician’s office called me to give me the name of a Psychiatrist that my physician wanted me to see. I was annoyed that he was still going down this trail, but I wrote the name of the Psychiatrist down. At this point, the biggest thing that was bothering me was that I was certain I had previously told my physician about all of the symptoms.

That evening I began going through all of my copies of written correspondence that I had given to my physician on previous occasions. I not only found written correspondence from two years prior that had detailed many of the symptoms to that date, but also written correspondence to my previous physician that noted a few of the symptoms that had emerged during that time period. Both correspondences should have been in my patient records file at my physician’s office. So, at this point I became even more upset about the initial bi-polar opinion. I composed a new written correspondence, detailing the beneficial effect of Sinemet on my symptoms, as well as referencing my previous correspondences. I faxed this new correspondence along with the previous correspondences to my physician’s office. Within an hour of that fax, my physician called to apologize and let me know that I would receive a referral to a Movement Disorder Specialist, and that there was not a need to see the Psychiatrist at this time.

Had I not implemented written communication into my relationship with my physicians, I believe that valuable time might have been wasted while chasing after a mental health disorder that did not exist. Of course, a few months later I took the steps necessary, as I noted in a previous post, to insure that in the future, mental health conditions could not be offered as the source of my condition. Additionally, had I not retained copies of my previous written communications, I would not have been able to offer proof that I had already shared that information with my physician. I also would not have had the ability to prove that the symptoms even existed prior to the most recent appointment.

In the second part of communicating with your physicians, I will better define some key elements that can assist a patient on how to be more effective in communicating both verbally and in writing. I will also post a “sample” written correspondence.

Internet Education During Diagnosis Process

I have previously written about the value of the Internet when trying to find a patient friendly physician. Additionally, the Internet has become my main research tool since I first began my search to find the cause or causes of my various symptoms. The Internet holds a vast amount of information, in one convenient location, which is so important when a patient is dealing with an undiagnosed condition. I have spent more hours than I can count, researching my symptoms one by one, cross-referencing conditions, and essentially ruling out conditions that were not applicable. This is not an example of a patient playing doctor. I was a patient, who took charge of her health by doing research, and who educated herself enough to be able to ask the right questions to specialists that needed answers.

Although we have been taught to depend upon physicians in the medical community to provide all of the answers for our healthcare needs, I have learned that taking this approach is not beneficial. I acknowledge that physicians have more knowledge about medical related issues than I will ever be able to glean from the Internet. However, each physician’s knowledge base differs, largely due to his or her specialty. For example:

1. A Primary Care Physician is a physician who provides both the first contact for a person with an undiagnosed health concern as well as continuing care of varied medical conditions, not limited by cause, organ system, or diagnosis. This physician can determine the cause of many acute conditions, such as an ear infection or a virus. Although a Primary Care Physician is not restricted from diagnosing a chronic illness, and will often render a differential diagnosis, many will refer a patient to a specialist that is specifically trained in a category of illnesses, to insure that the differential diagnosis is accurate. I personally believe that this action contributes significantly to the patient’s peace of mind, allowing the patient the peace of mind, knowing that the differential diagnosis is the correct one.

2. A Neurologist is a specialist who has trained in the diagnosis and treatment of nervous system disorders, including diseases of the brain, spinal cord, nerves, and muscles. A patient might be referred to a Neurologist if the primary care physician suspects a stroke, cerebral palsy, or a brain tumor.

3. A Movement Disorder Specialist is a Neurologist who sub-specializes in a group of similar neurological conditions that affect the way the body functions. Parkinson’s Disease, Dystonia, and Tourette syndrome are examples of conditions that would prompt a referral to a Movement Disorder Specialist.

4. A Rheumatologist is a physician who is qualified by additional training and experience in the diagnosis and treatment of arthritis and other diseases of the joints, muscles and bones. Under the Rheumatology umbrella, there are more than 200 types of these diseases, including rheumatoid arthritis, osteoarthritis, gout, lupus, back pain, osteoporosis, and fibromyalgia. Many of these conditions can be difficult to diagnose.

It is not by chance that I mention the above referenced physicians. From my experience, these physicians are the ones that a patient may see when the motor functioning of the body is in question. Specifically, I am referring to chronic conditions that may affect movement, coordination, balance, muscles, joints, etc. This would exclude other types of chronic illnesses such as heart related conditions, internal organ function, cancer, etc. I have learned that symptoms of chronic conditions affecting the motor function of the body can often be symptoms of either a rheumatic disease or a neurological disease. Because of this, a patient may be sent to see a Rheumatologist to investigate a rheumatic cause for the symptoms, and may then be sent to see a Neurologist to investigate a neurological cause for the symptoms.

One of the first specialists I initially saw was a Rheumatologist. I was sent to the Rheumatologist for an evaluation, specifically to rule out or confirm fibromyalgia. In addition to the fibromyalgia evaluation, my Rheumatologist ran specific blood tests to rule out other rheumatic diseases that she thought could be causing my symptoms. After her evaluation was complete, it was her opinion that my symptoms were neurological in nature.

From this point forward, I began seeing Neurologists, which includes Movement Disorder Specialists, through my insurance and as a private pay patient.

Rheumatologist – When I was referred for an evaluation, specifically for fibromyalgia, I spent multiple hours on the Internet to learn as much as possible about the condition. Additionally, I familiarized myself with some of the more well known rheumatic conditions, but only those conditions that had the potential to be the cause of my symptoms. I also made sure that I understood the types of blood tests and other diagnostic testing that are often ordered when rheumatic conditions are being considered. By educating myself, about not only fibromyalgia, but also the various other rheumatic conditions, I was able communicate effectively with the Rheumatologist during the visit. It enabled me to understand, the medical terminologies she used, why she ordered certain blood tests, and fully comprehend her opinion that my symptoms were neurological in nature. Finally, the greatest benefit I received by doing this research was confidence. I now had the knowledge to know the right questions to ask, the knowledge to understand the answers given, and the knowledge to know when an answer was contrary to what I had learned through my research.

Neurologist / Movement Disorder Specialist – I have been evaluated for neurological conditions by several Neurologists and Movement Disorder Specialists. I performed the same types of research for neurology as I had for rheumatology. When Multiple Sclerosis was a potential diagnosis, I learned everything I could about it, other potential neurological conditions, as well as appropriate testing through the Internet. A few years later when Parkinson’s Disease and Dopa-Responsive Dystonia became the focus, I learned everything I could about those conditions, as well as learning the difference between a Movement Disorder Specialist and a Neurologist. Based on my last visit with the Movement Disorder Specialist, I am now learning all I can about the various Parkinson-Plus conditions, again using the Internet.

Some people may say that I went to the extreme with respect to my Internet research. I have spent many years searching for a diagnosis. The many roadblocks in that search inspired me to educate myself enough, to be able to remove those roadblocks. Without knowledge, a patient places himself in the position of blind acceptance, and is fully dependent on someone else with respect to his or her health. I prefer to be a team participant with my physicians, rather than sit on the sidelines, anticipating whether someone else will reach that goal line.

Information that is invaluable to a patient during the diagnosis process and prior to any visit with a specialist is as follows:

1. Research the condition, which may have been a differential diagnosis from your Primary Care Provider. Understand the symptoms, causes, diagnostic testing, and treatment for the condition.

2. Research your symptoms to see if there are additional conditions that could be causing your symptoms. Make note of these conditions, so that you can discuss them with the specialist during the visit.

3. Research types of diagnostic tests that are routinely done for the category of conditions that the specialist treats, including blood tests, MRI’s, CAT Scans, etc.

4. Research some of the medical terminologies that a specialist may use for the conditions that he / she treats. Often, no additional research is needed with respect to medical terminologies, because they are often inclusive within research done on conditions, symptoms, testing, etc. I have found that Wikipedia, which is a free online encyclopedia, is a great resource for medical research, especially with respect to medical terminologies that are difficult to understand. I will post a link to this site in “Resources for PD, PD-Plus and other Movement Disorders”.

5. Educate yourself about the type of specialist you will be seeing. If you are going to see a Rheumatologist, make certain you have a general understanding of what a Rheumatologist is and the types of conditions he or she treats. Wikipedia is an excellent source for this research.

In summary, the Internet is the most effective and readily available tool I have used, when doing research on any topic involving my health. It is my primary source for information on physicians, medical conditions, symptoms, treatments, support groups, and any other health topic I may want to research. I have yet to find a topic of interest that was not available on the Internet. The Internet can provide a patient with knowledge. That knowledge provides the patient with the power to insure that the professionals within the medical community address his or her health in an appropriate manner that equals the patient’s expectations.

Mental Health - A Proactive Approach

I decided to share one of the strategies that helped significantly, while on my diagnosis journey. I only wish that I had used this strategy earlier, because it could have saved me time in the end.

As I have detailed previously, I was told several times, by multiple physicians, that my symptoms were attributed to a mental health condition, such as depression, anxiety, and stress. This scenario occurred repeatedly for nine years.

In November of 2006, I decided that I needed to remove any physician’s ability, to diagnose my symptoms as mental health related. Therefore, I decided to do what these physicians did not. Using my medical insurance, I referred myself for an evaluation with a Psychologist. I intended to have an evaluation, in order for it to be made perfectly clear, that my mental health was not the cause of my physical symptoms. With my HMO plan, I do not have to have a referral from my primary care physician, in order to seek out mental health treatment. Therefore, my primary care physician was only made aware of my plan, once my evaluation with the Psychologist was complete.

When I met with the Psychologist, I outlined to him my reason for being there. I provided my complete medical history, so that he would understand the motivation behind my visit. Although my reason for seeing a Psychologist was to rule out mental health conditions, I entered into the process with an open mind and the understanding that I might not hear what I wanted. I had made the decision that if the Psychologist diagnosed a mental health condition that he felt was causing my physical symptoms, I would accept that diagnosis, and I would address the diagnosis appropriately with the proper treatment. I was not arrogant enough to ignore the slight possibility that my symptoms might be due to mental health issues, although I felt strongly that they were due to an unknown physical medical condition.

The Psychologist and I met weekly for a period of two and half months. During those visits, he asked many questions, in order to have as much information about me as possible. Some of these questions were about my childhood, my family life, work, and any other subject he thought would assist him with the evaluation. Additionally, he had me meet with a Psychiatrist, as an additional diagnostic source.

During this time, I had decided to go off Sinemet, because I was aggressively pursuing a diagnosis. I believe that the timing was beneficial, because the Psychologist was able to observe me when my symptoms were being helped with the Sinemet, and he had the opportunity to observe the difference while off Sinemet. It is my perception, that having the opportunity to see me under both conditions assisted him with his final diagnosis.

In January of 2007, the Psychologist informed me that he did not believe that further visits were necessary. He said that unless I just needed someone to talk to once I was given a diagnosis; there was not any purpose for future visits. He rendered opinions, one of which I was already aware of. He told me I had minor Obsessive-Compulsive Disorder that did not require treatment. Additionally, it was his opinion that I was suffering from minor Depression because of not knowing the cause of my physical symptoms, but not causing my physical symptoms.

Once the evaluation was complete, the first thought that came to my mind was “validation”. When I arrived home and told my husband about the Psychologist’s opinion, I broke down and cried. For so many years, I had been told I was depressed, anxious, or stressed, that I was suddenly overwhelmed by the magnitude of what this evaluation meant. For example, I now realized, without a shadow of doubt, that I had a physical medical condition that would eventually have a name to it. For so many years, I had been prescribed anti-depressants that were not needed. Additionally, for so many years I suffered through physical pain, which could have been avoided, had physicians not insisted that I had a mental health disorder. With this realization and validation, I gained new confidence, which has enabled me to be more firm when dealing with my most recent specialists.

Now when I see a specialist, if the subject of mental health issues is brought up, I let him / her know about the evaluation. I then offer to provide the contact information for the Psychologist who evaluated me. Not one specialist has felt it necessary to contact the Psychologist. I firmly believe that had I not proactively been evaluated, that it would have left the option open for any specialist or physician, to make an initial mental health related diagnosis. By choosing to have a mental health evaluation done, it opened the door to seeking out the physical condition that was causing my symptoms. At this point, all I needed was a patient friendly specialist to take an interest in my medical history, as well as my current symptoms. In July of this year, I found that specialist. Again, I only wish that I had thought to obtain a mental health evaluation sooner than I did. Being proactive in my approach to rule out mental health issues has helped to expedite the diagnosis process.

I have been in contact with other patients, who have also been informed that their symptoms are mental health related. It appears that Depression is the condition that is diagnosed most often. Like me, many of these patients are female. Many have been prescribed a variety of anti-depressants with no resolution for their symptoms. Additionally, many have never been referred to, or instructed to seek out, a mental health evaluation by a licensed Psychologist, Psychiatrist, or Therapist. In my experience, it appears to be common for a primary care physician or a specialist to make the diagnosis and prescribe anti-depressants, prolonging the proper testing and evaluation for a potential physical medical condition.

Nine years ago, had I known at that time what I know now, I would have obtained a mental health evaluation then. Hindsight is always 20/20. Therefore, if you are a patient with undiagnosed physical symptoms, and you are being told that they are due to a mental health condition, I would seek out an evaluation as quickly as possible.

If you do have a mental health condition that is causing the physical symptoms, then you will already be under the care of the appropriate specialist, who will be able to render treatment.

If it is determined that a mental health condition is not the cause of your physical symptoms, then you will have a great tool to use as proof that a physical medical condition does exist. It will give you the ability to insist, with confidence that the specialists concentrate only on medical conditions that exclude mental health. If a specialist or primary care physician still refuses to acknowledge that an undiagnosed medical condition may exist, then it is time to find one that will. Although you now know without a shadow of doubt that a non-mental health related condition is highly probable, you need a specialist who also has that opinion. It is imperative to find a specialist that is willing to work with your primary care physician and you as a team, to determine the true cause and appropriate treatment for your medical condition.

Recommend A Specialist

The primary intent of this blog is to share some tips I have learned over the years with others who are having difficulties with trying to find a diagnosis for a chronic condition, but I also have one other goal in mind. Before any patient can be diagnosed with any condition, he / she must first find a specialist that is patient friendly. From my experience, that is often easier said than done.

Knowing what you expect from a specialist and learning some tips on how to locate a patient friendly specialist are important. Part of my vision is to include links to specialists, whom other patients have found to be patient friendly, caring, and thorough. In a prior blog I made the comment that “word of mouth is the best advertising that money cannot buy”. With that understanding, I am seeking input from patients, friends of patients, or families of patients who have a form of Parkinsonism or other related movement disorder, who have found patient friendly specialists.

I intend to add an additional links section, which will include contact information for specialists who patients have found to be patient friendly. Although I am focusing on Parkinsonism and other related movement disorders, specialist recommendations for other chronic illnesses are welcome also.

I have come across so many people with movement disorders, who have or are having the same difficulties I have faced, with respect to finding or confirming a diagnosis, as well as finding a patient friendly specialist to render or confirm a diagnosis. These patients are not only in my geographical area, but also throughout the United States. If a recommendation list can be compiled, based solely on patients’ personal experiences with specialists, it can increase the odds significantly for someone else who may be having trouble finding a patient friendly specialist. It could help save another patient time, frustration, anger, tears, and the anxiety that is felt when the patient knows there is something wrong, but is unable to find a patient friendly specialist to help find the answers.

Parkinsonism and other associated movement disorders often take several years, from the onset of symptoms, to obtaining a diagnosis. The variability of symptoms and progression of symptoms, adds to the difficulty of the diagnostic process. Additionally, several movement disorders are diagnosed solely on a clinical basis, which is dependent on the symptoms of the patient. Many of the conditions are so similar, that it is difficult for the specialist to discern which condition a patient may actually have.

From my own personal experience, if your symptoms do not fit into the textbook criteria developed for diagnosing a condition, then you might be told there is no possibility that you may have that condition. For example, I had one specialist specifically state that I was “too young” to have Parkinson’s Disease. I also do not have predominant tremor, but I do have bradykinesia as my dominant symptom, which affects my walking and speech. I am definitely not a Parkinson’s Disease textbook case, so right out of the hole, I did not fit in to the textbook description of someone with Parkinson’s Disease. Now, I still do not know if I have Parkinson’s Disease, but I do know I have Parkinsonism that currently responds to Sinemet, and I went through four specialists to get to the Parkinsonism diagnosis.

So many other patients out there do not fit the textbook description for a movement disorder, but may eventually be given a diagnosis. It is easy to understand that a specialist will not make a diagnosis on the first visit. A patient may need to be followed for a significant length of time, before the specialist has enough information to render or confirm a diagnosis. This scenario would be acceptable to most patients. The most difficult aspect remains. The patient needs to find a specialist, who often must look outside of the textbook descriptions of various conditions, and be willing to follow the patient until he / she feels comfortable with making a diagnosis.

Collectively, we can help each other by sharing information and providing personal recommendations to other patients. Therefore, regardless of where you live, by recommending a specialist that you have found to be patient friendly, you may be able to help a fellow patient in your area, who has not been able to find a patient friendly specialist. You may offer a recommendation directly through this blog by submitting a comment.

Thank you.

Time To See A Specialist

Although I have already detailed this information in My Story, including this information is important, because it leads into the reason why I chose to seek out a specialist, outside of my insurance.

The first time I went to see a neurologist, I had no idea what to expect. I did nothing in advance to prepare for the appointment. Additionally, I had no preconceptions about what I expected from a specialist. I believed that I would see the specialist, and after an examination, I would know what the cause of my symptoms were or be on the road to a diagnosis. I was wrong.

My primary care physician had referred me to a neurologist. I was being evaluated for Multiple Sclerosis. Rheumatoid conditions had already been ruled out. The rheumatologist I saw was very concerned that my symptoms were neurological in nature, and she wrote a very detailed report, which backed up her position. She was the second physician at this point who believed that I might be dealing with a neurological problem.

To make a long story short, I had the appointment with the neurologist. He did the typical neurological exam, and then he told me to follow up with him.

I returned to the neurologist, and I received quite a surprise when he rendered his opinion. This neurologist stated that my occipital headaches were caused by the fact that I was a female in my early thirties, and that it was common for women to begin having headaches at my age. He went on to say that my physical symptoms were being caused by severe depression. He told me that I was severely depressed, but that I did not realize it. I questioned him about the hard disc herniation that was touching my spinal cord, and he told me that it could not be causing my symptoms. (His opinion was based solely on a radiologist’s written report; he never requested to see the actual MRI.) I was then given a prescription for another anti-depressant. I left his office in tears.

To make matters worse, his report made me out to be just a depressed female, who had no “physical” problems. He even stated in his report that my cervical herniation was in no way responsible, advised against surgery, and he advised that I not be prescribed any type of narcotic pain relievers for pain. It appeared to me that this neurologist has made a presumption that I was the type to get “hooked” on narcotic pain relievers. I had made it clear to him during my appointments that I did not like to take medications, even those that you can buy over the counter. I was completely astounded.

Let us fast-forward two years. My symptoms had progressively worsened, and I was beginning to lose hope of ever having any answers. After a second neurologist that I saw through my insurance was unable to make any determinations, I finally convinced my primary care physician to send me to a neurosurgeon.

The neurosurgeon performed a thorough exam, and he then looked at the MRI films that I was told to bring with me. He pointed out the damage that was being done to my spinal cord on the MRI. The MRI films and a review of my symptoms convinced the neurosurgeon that my symptoms could be corrected by having a cervical fusion. He stated that my symptoms could absolutely be attributed to the hard disc herniation.

The surgery was a success, in my opinion. Unfortunately, I would soon realize, that although the surgery did correct the majority of my symptoms, new symptoms began to emerge within a few months after the surgery. These symptoms could not be attributed to spinal cord damage.

Multiple Sclerosis

I was at a standstill after my cervical fusion surgery. Because I began having new symptoms, I thought it was imperative to have Multiple Sclerosis completely ruled out. I had already been to the neurologists that were available through my insurance group. At this point, my primary care physician suggested that we take a “wait and see” approach. Unfortunately, I am not very patient, so I decided that it would be worthwhile to find a neurologist who specializes in Multiple Sclerosis, and to make an appointment as a private pay patient.

The Multiple Sclerosis Society referred me to a local specialist, and I was lucky enough to get a patient friendly physician. He requested further testing, which I was able to get the insurance to pay for. Based on all of the test results, as well as the exam, the neurologist’s opinion was that I did not have Multiple Sclerosis, but that I did have myelopathy from the cervival herniation.

I followed up with my primary care physician. He felt there was definitely something unrelated to the spine going on, but that the symptoms were not pronounced enough to determine a cause. Together, we decided that we would treat the symptoms as best we could. He believed that in time my symptoms would become more pronounced and clear, at which time we could pursue a diagnosis.

Parkinson’s Disease

Time moved forward two more years. Now, I not only had additional symptoms, but those symptoms were now with me every day, and it was becoming impossible to ignore them. My previous primary physician had retired, and I now had a new primary care physician, who is my current physician to this date.

Without a complete recap of what I have previously written, I was prescribed a trial of Sinemet, which had dramatic results. Because the Sinemet did improve my symptoms, I was able to get a referral to a Movement Disorder Specialist. Under normal circumstances, I would have been referred to one of the neurologists I had already seen while trying to rule out Multiple Sclerosis. Because Parkinson’s Disease has the distinction of being considered a movement disorder, I was able to insist that the insurance cover a visit to a Movement Disorder Specialist.

After waiting three months for the appointment date to arrive, I was sadly disappointed during that first visit. The Movement Disorder Specialist was not patient friendly, did not like to be questioned when he made statements that were contrary to what my husband and I had learned about Parkinson’s Disease through our research, and he refused to acknowledge that Sinemet was improving my symptoms. I decided not to see this specialist after my second visit.

I sought out another Movement Disorder Specialist as a private pay patient. I had hoped that I would get lucky like I had when I sought out the Multiple Sclerosis Specialist. Luck was not on my side. This person took offense that I was questioning the other specialist’s opinion, because she knew him to be a good physician. I was told that she did not know what was wrong, and she would have her office call me with information for another specialist. I never received any follow-up.

The next neurologist I saw was through my insurance. He was a new neurologist within my group insurance. He stated that he would be interested in having me as a patient. He believed that I had either Dopa-Responsive Dystonia or Young Onset Parkinson’s Disease. Unfortunately, after six months, he was honest enough to admit that he just did not have enough experience with movement disorders to render a diagnosis. I appreciated his honesty, but I was now faced with the fact that I had exhausted all of the neurologists within my insurance group. I belong to a small group, and all of the neurologists that were associated with this group had already seen me. I could have been referred back to any one of them, but there really was not much point in doing that.

I had no other choice but to search for a Movement Disorder Specialist outside of my insurance. I was so afraid that I would find another non-patient friendly physician, so I decided to get creative. I decided that I only wanted to see a physician who was truly interested in having me as a patient. There were a number of Movement Disorder Specialists in my area to choose from. I came up with a plan to narrow my options down, by using email.

I created a master email letter of introduction with two attachments, which detailed my symptom history, as well as an analysis of how each symptom related to either Dopa-Responsive Dystonia or Young Onset Parkinson’s Disease. I then searched the internet for Movement Disorder Specialists in my area. Once I determined which physicians, clinics, or larger hospitals I wanted to contact, I individually sent an email to each recipient. I sent out seven emails that morning. I was surprised when I received two responses by the end of the day.

One response came from the physician who founded a clinic that specializes in movement disorders, and the other response came from a larger teaching hospital. I did some research on the internet on each of the facilities, and I made the decision to make an appointment with the smaller clinic. A few of the specialists I had already seen were affiliated with larger institutions, and it appeared to me that it was more difficult to get personal attention, when there are so many patients walking through the door each day.

I called the clinic the next day to set an appointment and inquire about the cost per visit. I was to make an appointment with an associate, because the founder of the clinic was not taking new patients. I was surprised that not only was the cost reasonable, but I was able to get an appointment within two weeks. I had intended to email the physician to thank him and let him know that I had made an appointment with his associate at the clinic. Before I was able to do this, he had emailed me again to inquire if I had made an appointment. What astounded me was the fact that this physician not only took the time to read and respond to my original email, but cared enough to follow-up with me a second time. That depth of patient care is not very common. I was more convinced than before, that I had made the right choice on which specialist to see.

My husband and I went to this appointment fully prepared. Over the years, I had learned that providing as much information as possible was critical to helping a physician see the entire picture. I brought with me copies of all the records that I had that pertained to my current condition, as well as any records pertaining to my spinal problems. I also made a video of myself off Sinemet, so that the specialist could see how I am off medication.

The specialist turned out to be one of, if not the best specialist to date. During the appointment, the specialist looked through the entire stack of records I brought with me. She then performed a neurological exam. There were also multiple questions that she asked my husband and me. At the end of the appointment, I was told that she could rule out Dopa-Responsive Dystonia. She was not able to confirm Young Onset Parkinson’s Disease, but did diagnose Parkinsonism. The reason for not diagnosing Parkinson’s Disease was that my postural balance appeared to be worse than what would normally be expected in Parkinson’s Disease. This finding is more typical with Parkinson-Plus Disorders.

The specialist also requested that I have a sleep study done to rule out Narcolepsy and REM Behavior Sleep Disorder, because I have had symptoms of both for several years. I do know that sleep disorders are common in both Parkinson’s Disease and Parkinson’s Plus. For instance, narcolepsy has been associated with Parkinson’s Disease, and REM Behavior sleep disorder has been associated with Multiple System Atrophy, which is a Parkinson-Plus Disorder. Therefore, it makes sense entirely to have a sleep study done.

There is a reason that I wanted to include the rather detailed history of my experience with specialists, including those I was referred to through my insurance and those that I self-referred to as a private pay patient. Detailing the history allows me to pull together the three topics I wanted to address:

Why I chose to self-refer to a specialist as a private pay patient

How I was able to get tests I needed done and see a Movement Disorder Specialist, and have the insurance cover those costs

Persistence and knowing what you expect from a specialist



My Reasons for Seeing Specialists as a Private Pay Patient.

For both Multiple Sclerosis and Parkinson’s Disease, I was able to see neurologists through my insurance. Unfortunately, the results of these visits were less than satisfactory, including the one Movement Disorder Specialist I saw through my insurance. I decided that it was time to take the matter of my health in my own hands. I could have probably insisted and fought with my insurance, to make them cover additional visits to these specialists. The reason I chose not to take this path, was that it would have added a significant amount of additional time to the already vast amount of time I had spent looking for answers. I decided it was worth paying the money in order to save the time.

Although seeking a specialist outside my insurance did not guarantee that I would find a physician who was patient friendly, it did increase my odds. Because I was not limited by the constraints of insurance, I had the ability to choose the specialist from a much larger pool of physicians. I could choose a physician close to my residence, or I could choose a physician on the other side of the United States, if I so desired. Additionally, I could research a specialist, clinic, or associated hospital, prior to making that initial appointment.

I also see a Rheumatologist as a private pay patient. Originally, this Rheumatologist was associated with my insurance, so I did not have to search for her. I was so impressed with how thorough she was, as well as her level of care and concern, that I continued to see her as needed for my arthritis and bursitis, even though she is no longer a provider in my insurance group.

Once I decided to take charge of my medical care, including seeing specialists outside of my insurance, the diagnosis process speeded up dramatically. I do not believe that I would be at this stage of diagnosis, if I had not made the decision to look outside of my insurance. In summary, I will choose to see a specialist outside of my insurance, when it appears that there is extreme limitation with respect to the availability of knowledgeable specialists within my group insurance. I will always attempt to see a specialist within my group first. I now limit the amount of my time I am willing to invest in a specialist, who may not be the right person to be part of my “medical team”. Additionally, if I find a specialist, who is not associated with my insurance, I keep them as part of my team. If there is a specialist within my insurance group that should be part of my team, they are also included. In my case, the surgeons I have met with through my insurance are the only specialists within my insurance group, who remain as part of my team. My Rheumatologist and Movement Disorder Specialist are specialists I see as a Private Pay Patient. Whether or not the specialist is associated with my insurance, all are willing to work with my primary care physician, for the benefit of my health.

Testing, Specialists, and My Insurance

As you may recall, I sought out a specialist who specifically dealt with Multiple Sclerosis, when Multiple Sclerosis was a potential diagnosis. Although this specialist was not part of my insurance group, once he determined that additional testing was needed to rule out diagnosis, my insurance covered those additional tests. I have found that the insurance will cover tests that were not previously offered to a patient, if a specialist / physician recommends they be done. My presumption is that because these tests were determined to be necessary by a specialist in the field of Multiple Sclerosis, the insurance was not willing to take liability for not paying for the tests, especially had my true diagnosis ended up being Multiple Sclerosis. Consequently, had I stayed with the course of medical management that was being done through my insurance, I might not have been able to completely have Mulitple Sclerosis ruled out for several more years.

I have found that the above scenario holds true to this date. Although my specialists are not part of my insurance group, my primary care physician does not hesitate to request any test that these specialists feel is necessary. As long as the specialist is willing to work with and communicate with my primary care physician, there does not seem to be any issues with respect to testing. It is my personal belief that the medical team “spirit” and the open communication facilitate the willingness of my primary care physician to make the appropriate decisions with regard to my condition.

Although a Movement Disorder Specialist is not normally covered under my group insurance, I was able to utilize my insurance in order to see one. I believe that it became apparent to my primary care physician, after the positive results I had taking Sinemet, that there may have been prior specialists and primary care physicians who had incorrectly assumed that I was suffering from a mental health disorder. I believe that the prior physicians’ opinions that he received, were the reason that he also initially believed that my symptoms were mental health related. Once he became aware that mental health was not the problem, he immediately sent me to a local Movement Disorder Specialist. Additionally, my primary care physician became my biggest advocate with respect to helping me confirm a diagnosis.

I believe that I was able to see the Movement Disorder Specialist through my insurance for two reasons. Again, my personal opinion is that there could have very well been liability issues, if I had not received appropriate care in light of the potential diagnosis. Additionally, because Parkinson’s Disease and other related disorders, fall under a specific neurological class of conditions called movement disorders, a Movement Disorder Specialist is the most qualified to confirm a diagnosis. My insurance group did not have a Movement Disorder Specialist as a provider, but they did cover the visits.

Persistence / What I Expect From a Specialist

Each person needs to be able to define what he / she expects from a specialist or primary care physician. Over the years, due to my experiences with the medical community, I now have very firm expectations for those professionals who hold my health in their hands. My expectations are as follows:

1. Must be willing to take the appropriate amount of time during an appointment to address the reason for the visit, address any questions I have, and discuss any plans for testing, treatment, etc.

2. Must have good communications skills, as well as good listening skills. I want to be able to understand, in layman’s terms, what is being said about my medical condition. I also want to have the assurance that what I am saying is being taken seriously, being understood, and being used as a tool for diagnosis or treatment.

3. Must be willing to answer questions, even if those questions contradict his / her opinion. Example: If the physician makes a statement that is contrary to something I have read through research, I want to have the ability to discuss the difference between his / her opinion and the information I have found. Essentially, he / she must be able to acknowledge and deal with me, as a patient, being educated as much as possible about my condition.

4. Must not immediately make a diagnosis based on depression, stress, age, gender, life circumstance, or for any other biased reason that cannot be ascertained without a mental health evaluation or hard evidence based on testing that can prove a physical condition / disease does not exist. I do not want a physician’s quick fix or best guess. I want an accurate diagnosis, to the best of his / her ability, based on facts.

5. Must exhibit a genuine interest in my health, including appropriate testing, medications, or any other type of treatment that needs to be rendered.

6. Must be willing to work as a team with my primary care physician and me, in order to insure that my medical treatments are the most appropriate for my condition.

7. Must be willing to be honest and say that he / she is not able to ascertain a diagnosis, either due to lack of experience, vague symptoms, or for any other reason. I have more respect for a physician who says they do not have the answers, than for a physician who gives a diagnosis that does not cover the symptoms I experience.


Persistence


Regardless of the chronic condition, a patient must be persistent when seeking a diagnosis. I came up against many brick walls throughout the last ten years. There were many times I felt like throwing in the towel, and felt like I should just sit back and wait for this condition to take over. Despite being told I was depressed, too young to have true spinal problems, too young to have Parkinson’s Disease, and numerous other false scenarios provided by specialists and primary care physicians over the years, I knew that if I did not persist in finding a diagnosis, no one else would.

There were brief periods where I did have to take a step back, in order to regroup and rethink the methods I was using to get the answers I sought. Within each short break, I would come up with new ideas and methods to try, in order to persuade the next specialist to take an interest and want to help me get to the final answer. These breaks, as well as some guidance from my husband, helped me learn, not only how to deal with physicians / specialists, but what I can do to better up my chances of finding an appropriate specialist.


What I have learned through the last ten years, and now put in to practice, is the nexus of why this blog exists. It is my hope that what I share may help someone else to save time, frustration, and tears, and additionally to help someone not to have to learn by trial and error. If you visit a specialist / physician who show no interest or appear incapable of empathy, then move on. I went through several specialists and primary care physicians, until I finally found just the right ones, who were as interested in my health as I am. I chose not to give up, and that persistence provided me with an education I will never forget, but also a great group of medical professionals who work with me as a team.

Finding A Patient Friendly Physician

How many people have experienced this scenario or one similar to this?

You have just enrolled in an employer sponsored HMO medical plan. Your preferred primary care physician does not accept the new insurance, so you are forced to choose a new primary care physician. You pick a doctor at random from a list of physicians in your area. Once your coverage begins, you decide to make an appointment, because you have been having frequent headaches. You find out that there is a two-month wait for an appointment, so you make an appointment, because the headaches are getting worse.

After you wait the two months, you finally get to visit your new doctor. You arrive 30 minutes early as instructed, because being a new patient, you have paperwork to fill out. You then wait for an hour and fifteen minutes in the waiting room. Finally, your name is called by a nurse, who takes your vital signs. She then takes you into an exam room and tells you the doctor will be right in. After another 30 minutes of waiting in the exam room, the doctor finally comes in. He very quickly introduces himself and inquires about the reason for your visit. While you are explaining the reason for your visit, trying to give as much information as possible, he interrupts you before you are finished. He then states that you are experiencing stress related headaches, and he suggests that you reduce your stress levels, take an over the counter pain reliever as needed, and call to make a follow-up appointment in two months if the headaches are still occurring.

Before the doctor can leave the room, you try to explain that you have no additional stress at this time, and the over the counter medication is not covering the pain. The doctor discounts your explanation, and he repeats that he believes they are classic, stress related headaches. He then informs you that you can be under stress without even realizing it. The doctor refuses to prescribe a stronger pain reliever, but he does offer you an anti-depressant to “calm” your stress. You politely decline the anti-depressant, and you decide to go along with his first suggestion. Before you can ask any additional questions, the doctor thanks you and leaves the exam room. This entire visit lasted approximately five minutes, and you leave the office with the same treatment plan you had already been doing prior to the appointment.

Rather than take a wait and see approach, you decide that it might be quicker to change to another primary care physician through your insurance. Unfortunately, you now realize that you have a 50/50 chance of choosing a new physician that is just like the one you just saw. You really do not have any other option but to find a new physician, because you know that if your primary care physician is patient friendly, you are more likely to have your headaches addressed more thoroughly. You are also more likely to obtain a resolution for these headaches that have become such a disruption in your life.

This type of scenario occurs more often than it should. Imagine how much time is wasted, while you search for a new primary care physician who is patient friendly, and wait for that initial appointment. Depending on the circumstances, you might be looking at one to three more months until you are able to see the new primary care physician. In the interim, your symptoms continue to worsen and are affecting your quality of living.

Do you choose another primary care physician from a list of approved doctors at random? Or do you come up with a plan of action that might increase your odds of finding the right physician for your needs? I had to make this choice, and I came up with a plan.

The following are some of the methods that I have used to assist me when looking for a primary care physician or specialist. Although these methods are not a guarantee, I have found that putting them into practice does increase the odds in your favor.

Talk to friends and family - I have always believed that word of mouth is the best advertisement that money cannot buy. This was the first method that I put in to practice, and I found my first patient friendly physician. It only took one visit with the physician to realize that the reference I received from a friend led me to a physician that I was able to establish a strong doctor / patient relationship with. Not only was he an exceptional physician, but he was one of those rare physicians that gave you the amount of time necessary during your appointment, in order to deal with your medical issue. This physician never hesitated to order tests, and he never hesitated to refer me to a specialist. I remained with this physician until he retired from practice.

Talk to your current doctor – If you find yourself in a situation like I had, where your primary care physician is retiring, or will no longer be seeing patients for another reason, ask for advice on a replacement physician. My physician already had a replacement physician lined up. This was a benefit to me, because my retiring physician made sure that my new physician understood that I had a condition that was not yet diagnosed. On my first visit with my new primary care physician, he was already aware of who I was and had been advised of my medical history. This physician remains my primary care physician to this date. If your physician does not have his / her replacement lined up, ask whom he / she would recommend.

Look to the Internet – There are multiple free sites on the internet that will not only provide a list of physicians in your area, but many also include a rating for each physician. One such website is called “Find a Doctor”, and I will include a link to this site in the “Links” section. On this site, you can search for a primary care physician, specialist, or dentist. You can also see how other patients rate the physicians. Additionally, what I like about this site is that physicians list themselves on the site. They are reaching out to find new patients, which in my opinion, may indicate that they might have more time to deal with a patient’s issues, because they have not reached the point where they are continuously overbooked. Once you have selected a physician, you can then check to see if that physician accepts your insurance. Additionally, it is often wise to contact the physician’s office to make certain he / she is accepting new patients. If you have an HMO, you will need to contact them to let them know that you wish to change your primary care physician. Those with a PPO need only to make an appointment.

Look to Your Insurance Company – Most, if not all insurance companies, supply an online directory of covered physicians in their plans. Additionally, I know of at least one insurance company, that actually includes a rating system for physicians and hospitals.

Background Check – This is not as in depth as it may sound. I make it a practice to go to the California Medical Board’s website and look up any physician that I plan to see. The website will not only confirm that the physician you have selected is licensed to practice medicine, but it will also let you know if the physician has any disciplinary actions against him / her. I will include a link for this site in the “Links” Section.

Do a General Internet Search – Once you have selected a physician, perform an internet search using your favorite search engine. This is best done using the advanced search feature. Once the search is complete, the results might include medical articles published by the physician, information about professional associations, the physician’s website, etc. This type of information could be very relevant, especially if you are searching for a specialist who sub-specializes in a particular field of medicine, such as a Movement Disorder Specialist.

In my humble opinion, for those who are searching for a primary care physician, the best method to use is talking to friends and family. A primary care physician is a person with whom you are looking to establish a trusted relationship with. A reference from a patient, who already has that type of relationship with a physician, is a strong indicator that the physician is patient friendly.

When searching for a specialist, it does not seem as common to have a friend or family member who can provide a reference. If you are lucky enough to have a friend or family member who can provide a reference, that is still the preferred method. Otherwise, I have found that the best way to search is through the internet. Many specialists are not only listed on sites such as “Find a Doctor”, but many are also published and have professional affiliations, which can provide a wealth of knowledge with respect to their expertise. Unfortunately, expertise does not guarantee a physician will be patient friendly, so there is still a higher risk that a specialist may or may not be patient friendly.

For those people who have an HMO and are referred to a specialist by their primary care physician, I would still recommend finding out as much information as possible about the specialist. I have found that knowing as much as possible about a specialist, better prepares me for the appointment. Since I do not have control over which specialist I see, I feel more confident when I do at least know his / her background and expertise.

In a future post, I will address the subject of specialists a little more in depth. I will discuss why I chose to see specialists, outside of my insurance as a private pay patient, and the results of those visits. I will also address how I was able to see a Movement Disorder Specialist, using my insurance, because of the type of condition I have. Finally, the most important aspect I will address when trying to find the right specialist, is persistence. Being persistent, as well as firm about your expectations and requirements, are key factors in finding the primary care physician or specialist who you can build a trusting relationship with.

Physicians 50/50

While trying to decide where to begin, I decided that it would be appropriate to address the variables I have encountered with physicians I have come in contact with since 1996. I decided to break down the list into three categories consisting of: primary doctors, surgeons, and specialists.

The specialists consist of three neurologists, four movement disorder specialists, and one rheumatologist. For obvious reasons, names of these physicians are not revealed.

On this list, I have included a few sub-categories of opinions and treatments rendered by doctors, based on my personal experiences. I have also included the number of physicians in each category that I would consider as indifferent / difficult to deal with or as concerned / patient friendly.

Additionally, for specialists only, I included the number of specialists that I was referred to by my HMO insurance, and the number of specialists that I self referred to, as well as paid cash to see. (This is for reference only, and the issue of self-referral will be addressed in a future writing.)


Number of Primary Care Physicians 5
Ordered x-rays only 2
Ordered no tests 1
Ordered Multiple Tests 2
Stated symptoms due to depression 4
Prescribed anti-depressants 3
Stated symptoms due to gender 2
Indifferent / difficult to deal with 3
Concerned / patient friendly 2

Number of Surgeons 3
Ordered Tests 3
Performed needed surgery 3
Concerned / patient friendly 3

Number of Specialists 8
Stated symptoms due to depression 1
Prescribed anti-depressants 1
Stated symptoms due to age / gender 1
Indifferent / difficult to deal with 4
Covered by insurance 3
Private Pay, Self-Referred 1
Concerned / patient friendly 4
Covered by insurance 2
Private Pay, Self-Referred 2

Although this list only represents my experiences with physicians, as I look at the numbers, they increase my understanding of why it was so difficult to find concerned / patient friendly physicians over the years. For example:

- Four out of five primary care physicians attributed physical symptoms to depression, and three of the five prescribed anti-depressants, after little or no testing.

- Surgeons ranked higher than any other physician did. Three out of three surgeons ordered needed testing and performed necessary surgeries with satisfactory outcomes.

- Four out of eight specialists were indifferent / difficult to deal with.

From this point on, I will only address primary care physicians and specialists. Based on my list, the surgeons I dealt with, not only were thorough, but also were concerned / patient friendly physicians. My theory is that, outside of emergencies, surgeons deal primarily with specific conditions that can be confirmed through testing, prior to any surgery taking place. More often than not, if a patient is referred to a surgeon, an existing condition has already established. Additional testing requested by a surgeon, in addition to the examination by the surgeon, confirms whether a surgery is necessary or not.

As I looked at the number of indifferent / difficult to deal with physicians and compared it to the number of concerned / patient friendly physicians, it dawned on me that there were almost equal numbers of each. Therefore, 50% of the physicians were indifferent / difficult to deal with, and 50% of physicians were concerned / patient friendly. Consequently, each time I saw a new physician, there was a 50/50 chance that physician would be someone I could establish a good relationship with. Of the five primary care physicians, there were only two that I established a long-term doctor / patient relationship with. I consider both to be exceptional physicians.

Like me, if you have an HMO, you do not have much choice with respect to the specialists you are referred to. The choice that you do have is to choose a primary care physician that is not only concerned / patient friendly, but also one who you have the ability to build a strong doctor / patient relationship with. This type of physician will be willing to listen, be more willing to request the appropriate testing, and will not hesitate to refer you to a specialist if needed. If your primary care physician appears not to be looking out for your best interest, contact your HMO and find a new primary care physician immediately. Your primary care physician is the key to your health, even if you are not experiencing symptoms of a chronic condition. Having a good relationship with your primary care physician can save time when trying to obtain a diagnosis.

Although I do not have personal experience with a PPO, it is my understanding that having a PPO enables you to see any affiliated physician of your choosing. If you choose to see a primary care physician, and he / she appears not to be looking out for your best interest, immediately find another physician. Again, it is my understanding that you have the option to self refer, even to a specialist, without having to contact your PPO. This availability will save time, which is so important to any patient who is seeking a diagnosis. If your situation is urgent, and you do have this option, seek out an appropriate specialist first, and replace your primary care physician afterward. Having a PPO does not mean you should give up finding a concerned / patient friendly primary care physician. It only means that you have more options when faced with a potentially urgent or chronic medical condition.

If you have spent a significant amount of time searching for a diagnosis for your symptoms, and you have experienced difficulties, sit down and make a list of the physicians you have met with and what the results of your visits were. If you find that you also are having difficulty finding concerned / patient friendly physicians, you now recognize that finding the right physician needs to be the primary goal that will enable you to move forward.

The bottom line is that we need to increase our odds of finding physicians who we can have a good doctor / patient relationship with. In my next post, I will offer some tips that I found useful, that may be of assistance to patients who are searching for a new primary care physician or a specialist. These suggestions can be applied to patients who have either an HMO or a PPO.