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.

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.

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.

My Story - Part One 1992-2003

The first time I had a problem with my spine was in 1992 while I was pregnant with my son. I had been lying on the couch, and when I tried to get up from the couch my back went out. I ended up crawling on the floor for a few minutes until I felt safe enough to pull myself up to a standing position using a piece of furniture for help. There was not any pain, and once I was standing everything seemed normal again.

Although there were a few other times that my back went out briefly, it was in 1996 that I actually experienced any pain. I had bent over to pick something up off the floor, and I felt a stab of pain in my lower back that radiated into my left leg. For approximately three weeks, my lower back had excruciating pain along with the radiating leg pain.

It was not until late 1996 that I first sought medical treatment. After a few more times of my back hurting with the accompanying leg pain, I went to my primary doctor. Additionally I had left hip pain and a crunching sound that had developed. He initially did an x-ray of my hip for arthritis, but not of my spine, because he stated that he thought I only had a pulled muscle or that I was just under stress, so he gave me a prescription for Naprosyn. The x-ray of the hip was negative for arthritis, so he said that the pain was probably because I smoked or I was probably under stress. On about the third visit to this doctor for the same issues I asked if there were any other tests that could be done to try to find the underlying cause of the pain. He said that the only other test was an MRI and he would not order it, because he did not think it was necessary. Again, he reiterated that I was probably just stressed, needed to quit smoking, and that possibly I was suffering from depression. He stated that people my age did not have true back problems. I was 27 years old at the time. I decided that I was not going to return to a doctor about these issues.

Now we will fast forward to 1999 - 2000. I had a new primary doctor who acknowledged my back and hip pain, but again this one would not do any further testing due to my age. He, like the other doctor, suggested that I was either stressed or depressed and prescribed an anti-depressant. I knew I was not depressed, but I told him I would try it anyway. Needless to say that after a few months I told him I was not going to take it anymore, because it put me in a fog. He prescribed another one, to see if it would help. This one had the same result.

About the same time, I began having occipital headaches, which ran from my neck through the back of my head. I also began having blurred vision, which appeared to coincide with the headaches. Additionally, I began having some sort of pain under my right rib cage that would sometimes last for minutes or sometimes for days. This pain felt very muscular in nature, almost as if the upper abdominal muscles were tight from doing 1000 sit-ups. I had to go into his office a few times to get a shot to relieve the headaches. On the final visit for the headaches, my regular doctor was not available, so I saw another doctor at the office. He noted that I had been in several times for the headaches, so he decided to do a neurological exam. Based on that exam he suggested that he saw findings equivalent to early Multiple Sclerosis and that I needed to be followed up by my primary for a referral to a Neurologist. Additionally, he ordered an ultrasound to check for gallstones, which came up negative. When I went back to my primary doctor, he stated that he was not very interested in testing for Multiple Sclerosis, since there is not anything that can be done about it anyway with respect to treatment. I immediately began looking for a new doctor.

My new doctor turned out to be wonderful, although he did ask me to try the
anti-depressant route as the others had. Since he was willing to begin testing for physical problems as well, I went along with trying the anti-depressants. Within three months, he agreed that depression was not the issue, and I discontinued the anti-depressants, except for taking a small dosage of Amytriptelene for leg pain, which I was now having. He was able to rule out everything that he could through blood tests. He noted that I had winging of my right scapula and that my right shoulder was much lower than the left. Scoliosis was not an issue, and my leg lengths were equal. A Rheumatologist ruled out Fibromyalgia, but she was very concerned that I had bilateral leg weakness and pain. I had an MRI of the brain, which was normal. The MRI of the cervical spine noted a hard disc herniation at the C4-5 level that was “touching” the spinal cord. My lower spine showed disc herniations at L4-5, L5-S1, and other various signs of degeneration throughout the entire lumbar spine.

I was referred to a neurologist for assessment of Multiple Sclerosis. After spending approximately 30 minutes with me on the first visit and 15 minutes the second visit, he announced that he thought that I was just severely depressed and did not realize it. He said that the cervical herniation had nothing to do with my problems, although he never actually reviewed the MRI film. Additionally, he stated that my headaches were probably stress related and that many women in their early thirties begin having headaches due to hormone fluctuations. He tried prescribing another anti-depressant, and I told him I would not take it.

I was referred to another neurologist through my insurance, but he stated that he did not have any answers. I temporarily stopped trying to get any answers until after an incident that scared me half to death. I had an incident where all of a sudden I got extremely dizzy with vertigo and collapsed. The paramedics came and determined that I had not had a stroke. My ex-husband took me to urgent care the next morning. I was still unable to sit up or stand. It was determined again that I had not had a stroke. I was told that I probably had an inner ear problem, but there were not any tests to determine that. I was sent home. I was able to walk by the following day, but walked off-balance, looked like a drunk, for about three weeks. From that time on, I would continue to have vertigo and dizzy spells to a much lesser degree. I also began experiencing walking difficulties. It felt like my legs would get heavier and heavier the longer distance I walked, until it was too much of an effort to move anymore. They also began to give out, and I am very lucky that I was always able to grab onto something in order to prevent falling.

In 2001 I decided to see a Neurologist outside of my insurance to finally rule out Multiple Sclerosis. I contacted the Multiple Sclerosis Society who referred me to a doctor who specialized in Multiple Sclerosis. Although he did not believe that my problems were associated with MS, he did contact my primary doctor and let him know that they needed to finish testing for MS in order to completely rule it out. Therefore, my insurance did pay for an MRI of the thoracic spine, another MRI of my brain, evoked potentials, and a lumbar puncture. All tests came back normal, so MS was finally ruled out. Since there were findings during my neuro exam that he performed, he diagnosed myelopathy.

My primary doctor was hesitant to send me to a Neurosurgeon, because the first Neurologist that he had sent me to specifically stated that my problems were “not” due to my spine. Remember, he never physically saw the MRI and was only going off the radiologist’s report. Therefore, I spent several months taking painkillers, muscle relaxers, and going through physical therapy. Finally, the physical therapist said that he could not help me anymore and would let my primary doctor know. My legs had gotten very weak by this point, and physical therapy was not going to fix that problem.

I was finally sent to a Neurosurgeon in June of 2003. I was told to bring copies of my MRI. The surgeon examined me and looked at the films. He then pointed out to me where the hard disc was actually damaging the spinal cord at the C4-5 level. This was evident by a color change from black, which was how the rest of the spinal cord appeared, to white at the point where the damage was being done. He immediately began setting me up for surgery. My doctor was still hesitant about having me undergo surgery and only agreed after he spoke directly with the surgeon.

I had the surgery in August 2003. After the surgery I no longer had headaches, my legs did not feel heavy, the vertigo abated, and within about a year my leg strength appeared to be near normal. In hindsight, the only real issues that remained were the muscular lower rib cage pain, leg pain, and slowed walking. Because of the slowed walking, I believe I confused later specialists, because I never differentiated between the walking problems prior to surgery and after the surgery. I just used the term, “same walking problems” which was not accurate. It was within 6 months post surgery that the remaining problems and new emerging symptoms would set me on a new quest for answers.