My Story - Part Two 2003-Present

Approximately six months after my cervical spinal surgery I saw my primary doctor to let him know that I still had pain in my legs, and I was still having issues with walking. My walking was slow at times. A short time before this appointment I had noticed that my right arm was not moving while I was walking. I also began having “episodes”. There were two types of episodes. One type was the sudden need to sleep, regardless of what time of day it was. Sometimes, especially if I was at work, I would try to fight off the need to sleep, which sometimes worked after great effort. If I was at work and could not fight it off, I would close and lock my office door and lay my head down on my desk. At home, I would just go to sleep. Sometimes I would sleep for fifteen minutes, and other times up to two hours. The other type of episode consisted of my eyes getting heavy and needing to close without actually sleeping. During these episodes, my speech would slow down, and it would feel like my body was in shutdown mode. These lasted anywhere from five minutes to up to thirty minutes. I also had increasing daytime fatigue. My primary doctor stated that he knew that the surgery was not going to fix the problems. I reminded him that the majority of the issues were fixed, and that most of these current symptoms were new. At this point, we decided to try Neurontin for the leg pain and monitor the rest of the symptoms.

In 2004, I began having speech problems, which initially manifested only during times of fatigue, stress or anger. It began as stuttering, not being able to speak the word I was thinking of, trying to remember the right word, and low speech volume. I began to have creepy crawly sensations in my legs when I would lie down to sleep as well as cramping in my feet and calves. It was also during this time that my ex-husband would state that I never smiled anymore. Please note that all of the symptoms, except for the loss of right arm swing and fatigue, were intermittent and would come and go in random fashion for various lengths of time usually during times of fatigue, stress or anger.

During this time my primary doctor retired, and my current primary doctor took over his practice. Because I had a long medical history, I wrote him a letter of introduction outlining all of my pre-surgery and current symptoms. This letter would prove to save my hide later. When I met my new primary for the first time, he stated that my previous doctor had told him that I was a “special case”. My retired primary always told me that along with my spinal problems, he believed another unrelated condition existed that would become more evident with time. The reason for the first visit with my new primary was because I thought that I had herniated another cervical disc. Immediately my new primary stated that it was probably a pinched nerve, prescribed Prednisone, and told me to come back in 30 days if I was still having problems. Thirty days later, I was back in his office. He agreed to order an MRI, and it absolutely showed a new herniated disc at the C5-6 level. He referred me to the Neurosurgeon, and at that visit, we agreed to hold off on surgery to see if it would improve on its own. The acute stage ended, but I was left with livable neck pain, occasional occipital headaches, and pain that radiated down my arm to my thumb and first finger. I still have not had that surgery, but I know I am getting closer to having no choice but to have it fixed.

In 2005, I had left knee arthroscopic surgery for Plica Syndrome and Arthritis. I also began having constant, severe lower back pain with radiation into the left leg. Additionally I began having new symptoms such as nighttime sweating, urinary frequency and hesitation, constipation, insomnia, and sporadic tremors. All of the other symptoms were still intermittent, except for right arm swing and fatigue, but they did seem to come more often. I did not pursue any answers at this point, because the pain caused by my back was becoming more than I could handle. It took nine months from the onset of the consistent back pain to finally having the fusions to fix the problems, during which time I continued to work while finally escalating to oral morphine to deal with the pain. I had the fusions of L4-5, L5-S1 in December 2005, four days before Christmas. I came through the surgery fine, but I had complications with my bowels 24 hours post surgery while still in the hospital. My bowels completely stopped working, so the morphine drip was discontinued, and the only thing they allowed me to take was Darvocet. My bowels did begin to work again a few days later (Christmas Eve), so I was released by my surgeon Christmas Night. (I now wonder if the bowels shut down because of the surgery or from the underlying undiagnosed Parkinsonism condition, which all can affect the gastrointestinal system)

This surgery also fixed the issues it was intended to fix. I spent through mid February 2006 recovering and returned to work. In April 2006, all my symptoms began showing up more frequently. By July 2006, I no longer could walk at normal speed, and my speech was very low, slow, and hesitant. I was much less animated when speaking which was evidenced by lack of associated hand gestures and movements while speaking. Additionally, my husband said that my face had no expression, and I rarely blinked. He mentioned Parkinson’s Disease at this time, because his mother had it before she died, and he recognized the symptoms. I told him he was crazy. The worse part was that people at work began to take notice. My standard answer to their questions was that I was just tired. I waited a full month before I would make an appointment to see my primary. I was hoping that everything would go away as it had in the past. The symptoms stayed. (Note: In June 2006, I had right arthroscopic knee surgery for Plica Syndrome and arthritis.)

In August 2006, I saw my primary doctor. He was shocked by what he saw. He immediately stated that he thought I must be bi-polar. Thank goodness my husband was with me, because I would not have been able to communicate well enough in that condition to deter my doctor from going down the mental health path. My husband told him that there was no way that I was bi-polar, depressed, or had any other mental illness. He explained that we had worked together for five years, and that at no time had he ever witnessed any signs or symptoms of mental health conditions. Then he told my doctor his opinion about Parkinson’s. He convinced my primary doctor to allow me to try the Sinemet, because it would not hurt me if I did not need it. He finally agreed. Within 30-40 minutes of taking that first pill, I was a new person. What bothered me though was that my doctor stated that I had never mentioned any of these symptoms before. During the visit, I did not put two and two together. Later that day I remembered the letter of introduction I had sent him back in 2004. I wrote a new letter detailing how well the Sinemet was working and that I expected to be referred to a Movement Disorder Specialist. I faxed this letter along with a copy of the 2004 letter to his office. Within an hour, I received a call from my doctor agreeing to send me to a Movement Disorder Specialist. From this point on the relationship between my primary doctor and I became a prime example of what the optimal doctor - patient relationship should be. It was at this time we began working as a team to find the answers I had been looking for with respect to my medical condition.

It took three months to get in to see the first Movement Disorder Specialist. He was not worth the wait. He diagnosed Restless Leg Syndrome and prescribed Requip to be taken before bed. He had me come back for a second appointment to evaluate me off Sinemet. At the second appointment, he had residents with him that he was instructing and seemed to pay more attention to them than to my decreased physical abilities. My husband was very angry. The Movement Disorder Specialist also appeared to take offense when we questioned him about statements he was making that were contrary to the information we had learned on our own about Parkinson’s Disease. One example of such false statements was when he stated that I was too young for Parkinson’s Disease, which is definitely not a factual statement. He even put this statement in his official write-up that was sent to my doctor. This Movement Disorder Specialist decided to send me out for an EMG to rule out a condition that had already been ruled out. (Myasthenia Gravis) We went to have the EMG, but we never returned to this Movement Disorder Specialist. During this time, I had arranged to concurrently see another Movement Disorder Specialist, which I paid for outside of my insurance. She was polite until she found out I was seeking a second opinion. When I named the first Movement Disorder Specialist, she stated that he was a great doctor, and she could not understand why we would question his opinion. She then said that she did not know what was wrong and could not help me. She promised to have her office call with information about UCLA, so that I could try there, but I never received any further follow-up.

In November of 2006, I decided that a Psychologist should evaluate me in order to establish that my symptoms were physical in nature rather than mental. By doing this, I would be able to absolutely refute any further opinions that might be given by other doctors that my physical symptoms were related to mental health issues. I saw this Psychologist weekly for almost three months. Additionally, he had me evaluated by the facility’s Psychiatrist. The timing was right, because he was able to see me both on medication and off medication, because I went off the medication in December. In mid-January, he decided that unless I really needed to talk to someone or I needed to talk to him in the future once I received a diagnosis; there was not any need for me to continue to see him. In his opinion, I had mild depression caused by the undiagnosed medical condition, but this depression was not the cause of the physical symptoms of the medical condition. He also diagnosed mild obsessive-compulsive disorder, which I already knew I had, that was not in need of treatment. Now, whenever I see a new doctor or one I currently see, I let them know about this evaluation and provide them with the contact information for the Psychologist should they like to confirm what I tell them. Not one doctor has requested any written information from the Psychologist, but it is a great comfort for me to know that the information is there if it is needed.

I decided to go off the Sinemet in December of 2006 to try to better my chances of getting a diagnosis. I went out on temporary disability. By the time I went back on the Sinemet at the end of January 2007, it was becoming apparent that I might not be able to return to work. I finally made the decision not to return to work in March of 2007, and my primary doctor supported that decision.

I asked my primary if I could see the neurologist who performed the EMG. Although he was not a Movement Disorder Specialist, he recognized immediately that I did not have Myasthenia Gravis, which is the condition that the first Movement Disorder Specialist was having me tested for. He said he thought I could be dealing with either Dopa-Responsive Dystonia or Young Onset Parkinson’s. He seemed excited about having me as a patient. I saw him three times, but on the third visit in June 2007, he stated that he just did not have enough experience to diagnose the condition

I had added an Agonist to my medication schedule in May 2007 due to end of dose return of symptoms and breakthrough symptoms, so during that final visit I asked if he could assist me with increasing the Agonist to the maximum level, so that I might be able to avoid having to increase the Sinemet. I did not want to increase the Sinemet, just in case I was really dealing with Parkinson’s Disease. He agreed, and he also added a Sinemet CR at night to help with symptom control at night. It is now clear that within the first year of taking the Sinemet, its benefits were not as strong as when I initially began taking it. To this date, even with adding the Mirapex, I still have breakthrough symptoms as well as end of dose return of symptoms. The Mirapex helped me to lengthen my dosages of Sinemet from every two and a half hours to every three hours, fifteen minutes. I will probably start taking it every three hours, because of the end of dose return of symptoms. It also prevented the symptoms from returning as quickly as they did when I was only taking Sinemet. The decline in physical ability at the end of a dose, or on those occasions where I forget to take the next dose, is much slower.

I came up with a creative method to find a new Movement Disorder Specialist. I sent out a mass email to approximately seven doctors, clinics, and large hospitals. This email consisted of a letter of introduction and two attachments, which outlined my symptoms, plus how these symptoms fit in with respect to Parkinson’s Disease and Dopa-Responsive Dystonia. This mass email method allowed me to see who was interested in having me as a patient based off response to this email. I surmised that if someone took the time to not only read the email and the attachments, but also responded positively to that email, then that was the doctor / facility that I wanted to be involved with. This method paid off, and a specialist who showed great interest in helping me find a diagnosis contacted me.

I met with the new Movement Disorder Specialist in July 2007, and that is when Parkinson’s-Plus came into the mix, specifically because of postural instability. The Dopa-Responsive Dystonia was ruled out completely. The Movement Disorder Specialist diagnosed Parkinsonism, and I will see her every three months, so that she can follow my progress. Therefore, here I am today trying to learn as much as I can about the PD-Plus conditions and waiting to see if I continue to progress as quickly as I have in this past year. The Movement Disorder Specialist requested that I have a sleep study done to rule out or confirm Narcolepsy and REM Behavior Sleep Disorder. I am presuming that she is also waiting to see if the new medication regimen that was established in June 2007 continues to benefit me or if the benefits decline within a short period. The latter would be a greater indication of a PD-Plus condition rather than Parkinson’s Disease.

Aside from all of the symptoms listed, I have had very sporadic periods of blood pressure issues, which looking back, actually predate the motor symptoms by several years. I now have a monitor, so that I can take my blood pressure if I begin to feel dizzy. I have found that I do have significant drops in blood pressure at times, which I will address at my next appointment. Prior to medication, this symptom existed, but I never paid much attention to it, because that symptom alone was not a major concern.

Additionally, when my medications wear off a deep, morose depressive mood comes upon me that does not exist when medications are working, nor did it exist prior to the onset of any symptoms. I also find that I tend to be more emotional than I have ever been in my life. My “normal” personality was to internalize whatever was bothering me, keep it to myself, find a solution, and deal with the issue. More often than not, now I am more likely to allow emotions to reach the surface and cry more freely.

More recently, I have noticed that I startle very easily. Loud noises, quick movements, or someone coming up quietly behind me, can cause me to react physically and verbally. One example just happened two days ago. I was sitting at the computer, and my husband made a noise from behind a nearby open door that leads to the backyard. The unexpected noise caused me to jerk my head to the left and gasp. As a result of turning my head so violently, I think I may have either pinched a nerve or herniated another cervical disc, because I have pain running down my left arm, new neck pain, and my two outer fingers on the left hand have been semi-numb since this occurred. Needless to say, my husband feels terrible.

So far, I am able to still drive, although I no longer drive during the night, because I am dangerous at night. I have a difficult time with adjusting to different lighting degrees that occur at night and have extreme difficulty distinguishing distance at night. If abnormal weather such as rain or fog is involved, it is completely impossible to drive at night. Normally I will only drive locally, although I feel comfortable driving longer distances, but only when my medications are at their optimum level. Losing my ability to drive completely is one of my biggest concerns.

Since July of 2006, I have lost over 30 pounds. Although I was never considered overweight, now I am considered underweight by a few pounds. I have recently changed the way I eat and have added additional calories in order to try to gain a few pounds. It seems like I will gain a few then lose a few with this new method of eating. I am just wondering if the difficulty in gaining weight can be attributed to extra calorie usage during the medication “off” times. I would imagine that more calories are burned if you have to fight your body in order to walk, speak, etc. Another possibility could be a slowed digestive track, because I often have to force myself to eat, because I often feel full several hours after a previous meal. The only benefit to this problem is that I am eating some favorite junk food right now that I have not had in my diet for years.

Finally, medication effectiveness seems to be tied to many factors. The more physical activity I do, which isn’t ever much more than sitting in my garden pulling weeds or planting new flowers, affects how well the Sinemet works. On the rare occasions that I may do something excessively physical, such as walking for extended periods, too much housework in one day, etc., I may have to take an additional Sinemet to counteract the affected dose. Lack of sleep or extreme fatigue can make the Sinemet seem less effective. I limit my protein to the evenings, because the protein definitely affects the Sinemet. I have read that these variations in medication effectiveness are normal, but they are disconcerting nonetheless.

Upon doing multiple hours of research, I have subsequently learned that sleep disorders are common in both Parkinson’s Disease and Parkinson-Plus Disorders and can predate symptom onset by several years. Narcolepsy, REM Behavior Sleep Disorder, and Insomnia are the three main disorders associated with these conditions. I have had symptoms of Narcolepsy and REM Behavior Sleep Disorder for many years, and I have developed Insomnia within the last 3 years. It will be interesting to see what the results are from the Sleep Study Test.

Beyond any of the symptoms, the speech issues bother me the most. I enjoy having conversations with people, and I am most frustrated when the speech issues interfere with communication.