Trouble diagnosing Parkinson's

Posted by Glen Titterington @glentitterington, Jan 19, 2012

I am a 51 yr. old plumber with 27 yrs. in the trade. I have been exposed to many chemicals & elements , welding rod , solder , copper , lead , pvc glue & cleaner ( benzeen ) raw sewage etc. About 6 yrs. ago I started haveing issues with the fine motor skills in my right hand . Thinking I had carple tunnel I went to my doctor who sent me for a EMG , it came back " perfect " . Next he sent me to a neurologist , who sent me for a MRI , it came back "perfect ". Ruleing out M.S , stroke , brain tumor . He told me he didn't think it was Parkinson's but he would like me to go the M.I.N.D institute ( a movement disorder specialist ). The Dr. at MIND had me preform some hand eye excercises then he twisted and pulled on my arms and had me walk up and down the hallway . He then told me that he thought I might have Parkinson's ( His best guess ). Then he gave me Requip , told me to try it , said if the symptoms go away its Parkinson's. Well talk about a sucker punch ! I didn't see it comeing , I took it pretty hard. I went home and read the side effects of the Requip , it scared the hell out of me. The side effects seemed worse than the symptoms. The more I thought about it , I told myself this guy didn't run any test , how in the hell can he come up with Parkinson's ??? I told myself " this guy's a Quack " So I go to a second opinion clinic at St John's in Detroit , I see 7 or 8 Dr's. It was like a scene from the tv show " House " . They conclude " We don't think it's Parkinson's " YEEEEE ! HAAAAAA ! I thought . Then they say " I'm a mystery " . Unfortunately my symptoms have got worse since that time. Loss of motor skills right arm & tremor in right arm , I have difficulty with anything repetitive , such as washing my hair , brushing my teeth , working a screwdriver or wrench , or hammer. I would also like to note: I have never had a sense of smell. I get sinus infections alot. I have a cough that never goes away. My head breaks out with small boils every 2 to 3 weeks. Just before my problem started , I had a large boil in my right arm pit . I also had a cyst removed from My forhead . My wife said My head gives off a strange oder sometimes. I never had any of this until shortly before my arm issues started. This leads me to question has anyone ever heard of a infection that can effect your nervous system that acts like Parkinson's ? I know kids can get PANDAS , but can adults ? PANDAS or something similar ? I have had numerous MRI , EMG of My head , neck , spine and shoulder all " perfect " I did have a Dat Scan which shows Parkinson's predominantly on the left side. I have tried 4 Parkinson's meds , none with positive effects . One made me like a zombie , I mean a complete babbling idiot . Requip made me sick one half hour after every dose , I'm talking sweats , vomiting every time. Now my Dr is not completely convinced I have Parkinson's.He wants me to try Azilect Not sure if I want to. Over the course of the last 6 yrs. I have seen 20 Dr's includeing 3 neurologist, 2 physiatrist , Uof M infectious disease ENT , accupuncture , chiropractor 2 derms. They all acknowledge the symptoms but are unclear of the diagnosis. My sister wants me to go to the Mayo what do you think ?

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@kerryberry

Thank you! Yes, we have a fair amount of near issues in just three generations. My child also developed a mild case of POTS (just barely meets the criteria) and while the PANDAS is in remission, thankfully, they still have significant fatigue due to the pots. In my child's case, there was clearly an association between strep infections and deteriorations. There were a lot of other conditions that were ruled out, including Wilson's (which is a copper metabolism issue so very different treatment). Ultimately, it is still considered a diagnosis of exclusion, as a biomarker hasn't been confirmed yet (although there is ongoing research and my child had various abnormal labs, including complement activation even after the infection was treated and cleared). There have been a couple of studies using MRI and one that used a particular analysis to detect volume changes in the basal ganglia. It took some time for a proper workup and diagnosis, and that was 6 years ago. Their fatigue now looks sort of like mine, but they do not have a fibromyalgia diagnosis. I try to learn everything I can in the hope that they can reach full health and their potential.

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@kerryberry,

I certainly admire your persistence in advocating for your family. It is an important when you are dealing with hard-to-diagnose disorders.

Was the diagnosis made by a neurologist or an infectious disease specialist?

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