Monday, September 3, 2007

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.


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.

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