Trouble diagnosing Parkinson's or other condition

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.

janet42 | @janet42 | May 12 9:13am

In reply to @cctee "Which Parkinsonism disease do they think you have? Is the medication working for you? I hope..." + (show)

I was just diagnosed with PD after 2 years of symptoms that my primary doctor did not pick up on! Don’t know what KIND I have, but thankfully no tremors or hallucinations ! Mostly mobility issues.

jbug25 | @jbug25 | May 12 6:40pm

not an expert. but dat scans can tell you something. you said that you were exposed to toxins which may be the culprit. not sure if you had history of smoking and drinking alcohol but let doctors know in case they need to check you for vascular parkinsonism. I would think the mri and other tests would show if you had tia's or mini strokes. sometimes vascular disease will pose as parkinsons. If you are having pain anywhere may be an important factor to consider as well. My husband tried requip and got a little loopy. we stopped it obviously. we went through about 5 years of trial and error to diagnose him.

chrissyv153 | @chrissyv153 | Jun 14 6:50pm

Hello,
I am a 60 year old female who started having pretty severe pain in my right bicep after lifting a mattress. Thinking that time and rest would heal my arm I didn't think much of it. After no relief or healing, I was referred to a pain management specialist. His diagnosis was a pinched nerve in my cervical spine. I went to physical therapy for 8 weeks with again no relief. I began to have a noticeable tremor in my right hand so I made an appointment with a Neurologist who ordered an EMG test. The test itself showed no abnormalities, but a different Neurologist who read the results and performed some in-office testing told me I had early-onset Parkinson's. I then followed up with the Neurologist who ordered the EMG test and she adamantly told me that I don't have Parkison's or MS but a movement disorder. My tremor has progressed down to my leg and foot on my right side. When I read your post, my jaw dropped when you mentioned not being able to brush your teeth or wash your hair. I too am losing dexterity on my right side, which is aside from the tremor, most concerning to me. I have seen 8 different doctors and have told all of them those exact words, "I can't brush my teeth or wash my hair with my right hand". Three years later, I still have no definitive answers and am now having trouble walking with my right foot. I have been "diagnosed" with fibromyalgia, chronic pain, pinched nerve cervical spine, early onset Parkinson's, movement disorder, and anxiety. I realize your post is now 12 years old, but I'm hoping and wondering if you found any definitive answers to your ailment and if you can please share any updated information that might bring me some relief.
Also, welcome any other comments from other posters.

sillyblone | @sillyblone | Jun 15 1:38am

In reply to @chrissyv153 "Hello, I am a 60 year old female who started having pretty severe pain in my..." + (show)

Hello and welcome to this site. I can tell you that Parkinsons is a Movement Disorder. But, that being said I am surprised at the right side only being affected. I hope you get to feel welcome on this site. Take care. 🫂

Teresa, Volunteer Mentor | @hopeful33250 | Jun 15 12:10pm

In reply to @chrissyv153 "Hello, I am a 60 year old female who started having pretty severe pain in my..." + (show)

Hello @chrissyv153,

I want to join @sillyblone in welcoming you to the PD support group on Mayo Connect. Many of us who now have a PD diagnosis have spent much time in neurologists' offices trying to understand some very real symptoms, and often without any real answers. Neurological disorders have overlapping symptoms, and this makes it difficult for even a trained neurologist to make an accurate diagnosis.

Have you been evaluated by a movement disorder specialist? This is a neurologist who specializes in the type of movement disorders you mention.

I would encourage you to learn as much about PD as possible so you will have a better understanding about PD. The Davis Phinney Foundation is a good place to start. It's website has lots of webinars and videos about PD and how it affects individuals. Not all PD patients follow the same pattern of symptoms.

A good place to visit would be a Parkinson's Center of Exellence. Mayo Clinic is one such center. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona, and Florida can be found here http://mayocl.in/1mtmR63.

If you cannot obtain an appointment at Mayo, you might check with the Davis Phinney Foundation to see if they might know of a Center of Excellence nearby.

I look forward to hearing from you again as you seek an answer. Will you continue to post?

slarson14 | @slarson14 | Jun 17 6:36pm

In reply to @hopeful33250 "Hello @chrissyv153, I want to join @sillyblone in welcoming you to the PD support group on..." + (show)

Excellent post.

Chrissie: Keep at it until you get a definitive diagnosis. Don't let them just throw medications at you without out certainty of what is being treated. But, sometimes they do use meds to see if you get a response; this is in order to define what you may or may not have.

From what I have determined, Parkinson's is diagnosed about TEN years after onset; it is just that the symptoms are so slow in coming on and often don't progress at a steady rate, or start stop fashion.

sillyblone | @sillyblone | Jun 17 7:42pm

In reply to @hopeful33250 "Hello @chrissyv153, I want to join @sillyblone in welcoming you to the PD support group on..." + (show)

I would also ask tons of questions . Write them down. Everything sometimes makes us go blank and forget your understanding. Write your symptoms down, what is expected of you with these meds and illnesses. If I were you I would have a bracelet with your most important diagnoses. That way if you should get hurt or are not clear headed, maybe from a fall. It helps EMS when they come to the scene. Get information from the Parkinsons Association. Find out where the main office is for your state. For instance Florida site is in Miami. Everyone has different experiences. Again welcome to this forum. I have had so much support since I joined. 🫂 🤗

davejr | @davejr | Jun 24 8:47pm

As I understand it, Parkinson's is really a clinical decision. I was diagnosed by a neurologist overseen by a very senior neurologist at Mayo Rochester and the prescribed carbidopa/levodopa (Sinemet) has proven helpful in reducing tremors and eliminating my frequent falls. Good luck to you.