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Trouble diagnosing Parkinson's or other condition. Go to Mayo?
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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@chrissyv153
It is so good to hear from you again. You have provided a glimpse into your Parkinson's journey, and I'm glad that you shared it with us. While it is impossible to answer all your questions, it is important to consider many of the improvements made since the introduction of the medications. It is a great indication that you can now use your right arm and hand. If the carb/levodopa is helping, that is one important sign of a PD diagnosis. Also, the fact that your pain has improved is a good indicator. Pain and stiffness are signs of PD that generally do improve with medication.
My PD diagnosis came after many tests and years of being uncoordinated and feeling klutzy much of the time. After all sorts of tests to rule out other brain disorders, my neurologist put me on carbidopa/levodopa, and my symptoms improved, which confirmed a PD diagnosis.
Regarding your anxiety, I was also anxious after my PD diagnosis. However, once the medication started to work and I noticed the benefits, I began to relax and accept it willingly.
You don't mention any physical therapy or any regular exercise program. The combination of medications and exercise is vital to PD management. Has your doctor referred you to physical therapy specific to PD? If not, please ask about it. Exercise will be good for your PD symptoms and also for your anxiety. The more control you take over both disorders, the better you will feel.
Here is a link to a video from the Parkinson's Foumdation about the benefits of exercise for PD,
@jiminkansas I can understand why it's taking so long for the VA to respond - they simply don't have enough people and nonetheless they have recently had funding diminishsed and several VA workers have been RIF'd. I shan't indulge myselfI (wife of a Veteran) in a rant about that because that won't help you in the teeniest bit. One thing that might get you better results is to contact your Congressman and your Senators about this. If nothing else, if he/she doesn't respond as you would wish, at least you'll lnow not to vote for him the next time he runs. Your elected representatives have lots of green weenieson their staff who are just tickkled speechless to work 100 hours a week for embarassingly low wages for Congressman Bilbo or Sentator Dumbledore. and it is their plight in life to make their boss look like Mother Theresa or Superman to the rest of the world. handling a constituent's problem (most especially those of a Veterean) helps them achieve that goal. .It might even get him some free air-time , too. So go to Congress.gov and type in your address. The name and contact info on your representatives should be revealed unto you as if by magic. Don't be worried if some young person who sounds like they're still in high school calls you to see what you need. It's not an insult. Senators and Reps have their hands quite full at the moment. And, even if they didn't, some pimple-faced 19-year-old probably knows a lot more about the ins and outs of getting problems addressed because they've been hired specifically to do this work and many of them are just as bright as a brand new penny (except that we're not going to have any more brand new pennies,arew we?) and smart as a whip. Someday THEY may becone an elected representative. The really clever ones develop relationships with the people tasked to respond to these kinds of requests -- learning skills (and developing an impressive Rolodex/ contact list) to become a Senator of Representative themselves). I don't know what your elected State Reps and Senators would be able to to to help you, although the Governor may be looking for ways to help them climb that ladder. You can help with that if he sucessfully solves your problem with VA - every body benefits in the back-sctatching game here and your taxes are paying the salaries of the people you are asking to help you. Leverage them to work for you.
Have you been in the military? I think a lot of my exposure to toxic substances around the world while I was in the military has a lot to do with my Parkinson’s