Trouble diagnosing Parkinson's or other condition. Go to Mayo?

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 ?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

Profile picture for radioactivems @radioactivems

The worst symptom is tremors in my left hand and decreased fine motor functions in my right hand. It makes it tough at times to type and use a computer mouse at work.

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@radioactivems

I understand what you mean when you say, "It makes it tough at times to type and use a computer mouse at work." When I was first diagnosed, I was still working, and my thumb would inadvertently hit the space bar, creating a lot of corrections after I finished the project. It is frustrating, isn't it?

I look forward to hearing from you again as you continue the process of testing and treatment. Will you continue to post?

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @radioactivems and welcome to the PD discussion on Mayo Connect. You posted that you have an appointment at Mayo next week. Is this to confirm a PD diagnosis or to develop a treatment plan? As Mayo Clinic is a Parkinson's Center of Excellence, I'm sure you will get great care.

What are the most troublesome symptoms you are dealing with right now?

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The worst symptom is tremors in my left hand and decreased fine motor functions in my right hand. It makes it tough at times to type and use a computer mouse at work.

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I went to Mayo last week for evaluation and was extremely impressed by my neurologist. I have several appointments for tests coming up in 10 days. I'm looking forward to finally getting some answers. It's definitely worth the 400 mile drive.

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I'll have a Dat-Scan, blood test, sleep oximetry and an appointment in the Motion Disorders Lab.

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Profile picture for radioactivems @radioactivems

Hi
I had a tremendous intake appointment. I'm going back on the 22nd for a series of tests to hopefully confirm a diagnosis.

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I appreciate the update, @radioactivems. I'm so glad to hear that your appointment went well and that you will be having more tests to confirm the diagnosis. Do you know what type of tests have been ordered for the 22nd?

I'll look forward to hearing from you again. Will you post when you have more information?

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @radioactivems and welcome to the PD discussion on Mayo Connect. You posted that you have an appointment at Mayo next week. Is this to confirm a PD diagnosis or to develop a treatment plan? As Mayo Clinic is a Parkinson's Center of Excellence, I'm sure you will get great care.

What are the most troublesome symptoms you are dealing with right now?

Jump to this post

Hi
I had a tremendous intake appointment. I'm going back on the 22nd for a series of tests to hopefully confirm a diagnosis.

REPLY
Profile picture for radioactivems @radioactivems

I'm going to Mayo next week I want to be examined the best in the business

Jump to this post

Hello @radioactivems and welcome to the PD discussion on Mayo Connect. You posted that you have an appointment at Mayo next week. Is this to confirm a PD diagnosis or to develop a treatment plan? As Mayo Clinic is a Parkinson's Center of Excellence, I'm sure you will get great care.

What are the most troublesome symptoms you are dealing with right now?

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It sounds like Tremors Essential & Raynaud’s Disease. I had to get a second opinion the first dr didn’t do any test. I knew about the Tremors Essential already. Arrived for my appt. it didn’t take long for the doctor to come in right away she wanted to do some tests on me after all the tests where do she come to the conclusion that I have Raynaud’s Disease not Parkinson’s Disease

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The newest skin test with 3 small samples tested for Beta synucleins is
most accurate and seems less invasive than the spinal assay. DAT scan
is helpful with prognosis and fine tuning diagnosis. We all want the most experienced doctors for our treatment. You are fortunate to have access to
a high level of care.

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I'm going to Mayo next week I want to be examined the best in the business

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