When I was admitted to the hospital last summer, Siobhan had mention to Anthony Ciccaglione, my doctor that my shaking was getting worse in my left side. He suggested going to see a neurologist. We put this off until December when it got worse and I was weak and tired all the time. Dr. Sena sent me for some blood work and an MRI of the Brain and put me on Mysoline® for my tremors. Later he said I had a mild case of cerebellar ataxia (I had problems with balance and speech) and not to worry.
Siobhan wanted another opinion so we went to see Dr. Anthony Quan Hong in Fairfield. They put me through tons of blood work, and eye test, a urine test for copper, a blood work for paraneoplastic syndromes, an EMG as well as repeating those crazy neuro tests. It appeared my balance was way off and I was having more problems with speech. I knew what to say it just wouldn’t come out. We worried about Wilson’s disease, MS, ALS and never thought too much about Parkinson’s Disease. Michael J. Fox announced his retirement from the show Spin City due to his Parkinson’s. They ruled out everything before saying it was Parkinson’s. My Mysoline® had been upped to 300mg per day and did nothing for my. Anthony asked if I wanted to try Sinemet®. It worked magic. This drug diagnosed my Parkinson’s. I was to come off the Sinemet and start Eldyprel and Symmetrel as well as take 2000 IU of Vitamin E a day. I was plagued with problems at first but as of this day my off days are few. He put me on Zoloft to control my anxiety and depression but that had an adverse effect – it made my PD bilateral.
Siobhan made an appointment with Dr. Sena, the Neurologist, in Stratford for 1:30PM. I described my symptoms:
Increasing tremor in left hand
Weakness of left arm
Difficulty with balance
Weakness in legs
After his neural examination he suggested I had cerebellar ataxia especially since I had French Canadian blood running through my veins.At one time there was a group of French Canadians marrying members of their own family that resulted in their descendants having a form of ataxia. He scheduled an MRI and blood tests. He noted my tremor was asymmetrical and prescribed Mysoline, an anticonvulsant for the tremors – 50mg twice a day. I had taken this once before in college for migraines.
We had been doing a lot of Internet research on this ataxia. I even went to chat rooms and all of the people I spoke to suggested I had something else – possibly MS. That was something I obviously didn’t want to have. The MRI was scheduled for today. I was all set up in the machine to go and after several minutes they tell me the machine is broken. I didn’t experience any anxiety inside the machine – only the anxiety of waiting until the next time.
Had the MRI done and this time everything went as planned?
Dr. Sena called Siobhan and said not to worry – I just had a mild case of cerebellar ataxia (although we were a bit suspicious because I had no family history of it. Siobhan was not happy with a diagnosis that quickly so she made me an appointment with Neurological Associates of Southern Connecticut. Sena did mention my Potassium was slightly low and serum copper was slightly high. Mysoline had worked for less than one week and fizzled out.
We still had our lists of complaints listed from Dr. Sena’s office plus we added more:
Increasing tremor in left hand and arm
Left arm was weak
Loss of balance – I’d fallen twice in the last month
Legs have ached and been stiff for over 1 & ½ years
I had this constant pain in my right foot
Siobhan had noticed I don’t swing my arms when I walk
I had restless legs during the night
My handwriting was bad
Sometime I had problems expressing my words
Dr. Anthony Quan Hong noted the following:
Decreased sensation in left foot with tuning fork
Reflexes were exaggerated
Unable to touch finger to nose with left hand
Lost balance walking one foot in front of the other
Observed cog wheel rigidity
He increased Mysoline to 100mg twice a day and wanted to see me again in two weeks. I had an appointment with Dr. Sena that night which we cancelled. Now the anxiety began for both of us again. Another month of testing with only the worst thoughts running through my head. I kept telling myself this was Parkinson’s Disease.
Siobhan picked up the MRI films from Bridgeport radiology in the morning. We couldn’t wait to see Dr. Anthony because the Mysoline wasn’t working. I had been tremoring uncontrollably that day. The increased Mysoline had only held tremor for about 4 days.
Dr. Gross noticed:
Concerned about weight loss
So he ordered the following tests:
Paraneoplastic syndrome workup which checks for precancerous situations
Increased Mysoline to 150mg twice a day
Checked MRI from December. MRI was negative, Halovorden Spatz disease was negative
Ordered lumbar puncture to rule out MS, Syphilis, HIV and Lyme
EMG ordered for 1/31/2000
I had paraneoplastic blood work done at Quest Diagnostic labs n Trumbull. The stupid people there had no idea how to order this, what kind of medium to store it in or how to bill it. After about an hour they found out the blood work had to be sent to an outside lab in Boston.
Dr. Siegel, the senior partner at the group performed the lumbar puncture. He also ordered blood tests for Lyme as well as checking the spinal fluid.
He tried to perform the puncture several times while I was in the fetal position. This was not a pleasant experience. He kept hitting a nerve that went down through the kidney region. To get the sample, he had me lean over a table with the support of Siobhan and a nurse. At this point it felt like it would never end. I was sweating and feeling real uncomfortable. As he pulled the needle out AI could feel the trickle of blood down my back. Was very happy to leave there but we left more worried than ever. I don’t think the two of us have cried more than during this one month of our marriage. We just wanted to know what was going on.
I woke up this morning with increased tremors. This time they were severe and the Mysoline lasted a whole five days. Dr. Gross called (he was covering for Dr. Anthony). He increased the Mysoline again to 200mg twice a day. The results from the spinal tap and the blood work were not back yet. He was concerned about my elevated copper level and he suggested the EMG be rescheduled to a closer date. He told us to call on Monday and tell them to reschedule per his orders.
Siobhan called the office and they told us to come in that day. Dr. Gross performed the EMG. Dr. Anthony was back from his trip to Ireland to propose t his future fiancé. The EMG was negative so he invited Anthony on the room. They reiterated the masked face, lack of movement in arms when walking. The lumbar puncture was negative as well as the paraneoplastic blood work and the other blood work. They said I was concentrating too hard on walking correctly. Told me to go see Dr. Delia Manjoney and be tested for Keyser Fleisher rings which were indicative of Wilson’s disease as well as have a urine copper level and blood copper level done again.
I went to get collection container for urine copper level, which I returned the following day. By now they all knew me at the lab
The symptoms were getting worse so I called Anthony from work. He said not to increase Mysoline anymore because I was getting in to anticonvulsant levels.
We had a big snowstorm yesterday. I had an appointment today at 8:15 AM with Dr. Delia Manjoney located on Main Street in Bridgeport, CT to be tested for Keyser-Fleisher Rings – the test was negative. She was bout a half hour late and she decided to do a complete eye exam. She billed the insurance for a regular eye exam and I received the rejected bill in August. It was finally straightened out in November.
I had an appointment at 10:15 with Anthony and of course I was late – not only had my eyes not undilated, the doctor was late, but the snow slowed everybody down. My serum and urine copper levels were negative as well as my eyes. He ordered another smear to rule out neoplasms as well as a CAT scan of chest and abdomen with contrast to rule out any tumors or cancers. He asked if I wanted to try Sinimet 25/ 100 for 2 weeks. Siobhan and I agreed to it happily. We had spent several months researching various diseases and PD seemed like the lesser of the evils to us – MS, ALS, etc they all had rapid tragic endings.
Decreased Mysoline to 100mg daily
I had my 11:00 AM life altering appointment today with Anthony. We discussed the Sinemet and how wonderful I felt. That was the Diagnosis- today was the day we had waited for but dreaded – I had Parkinson’s Disease. My life would never be the same after today. [of course in November we find the diagnosis worsens] I was sent home with prescriptions for Eldepryl 5mg twice a day and Symmetrel 100mg twice a day; he decreased my Mysoline to 50mg a day, decreased the Sinemet by 1 every 3 days and suggested I take Vitamin E 2000 IU per day