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.

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.

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.