Connect
Trouble diagnosing Parkinson's
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 ?
Like
Helpful
HugInterested in more discussions like this? Go to the Parkinson's Disease Support Group.
Connect
Have them test you for autoimmune disorders. I'd go off the meds....
The very first med I was given, to treat Parkinsons, in 2002 was Requip. They made me nausiuos and unable to function for nearly an hour after I took each dose. The Doctor redused the dosage only to be ineffective of treating the PD symptoms. I quit taking Requip and told my Doctor that if he didn't take me off of them, I would rather live with the PD symptoms.
-
Like -
Helpful -
Hug
1 ReactionSorry to hear of your condition. It's horrible to have to see so many "experts" who ultimately can't help. I'm a 61 year old man who's also considering the Mayo as my last hope. I'm curious if you or others are going through some of the same thoughts as me regarding if it's really worth going to the Mayo.
Over the last year and a half I've had ever-increasing loss of fine motor skills in my right (dominant) hand. Can't easily write, use a fork, tools, etc. I've also got carpal-tunnel-like symptoms - numbness and tingling in several fingers and elbow pain. About 12 years ago, I had carpal tunnel surgery and that cleared up things, but the symptoms eventually came back. Cortisone shots in my wrist helped, but eventually wore off and, since the durations shortened between "recovery", I stopped getting them. I've had the carpal tunnel symptoms so long that I've gotten used to them, but the loss of fine motor skills is really frightening.
I saw tons of specialists in the Seattle area who couldn't diagnose me and the ultimate conclusion was to go to the Mayo. (Auto-immune diseases like MAMA were considered and I was treated with IVIG infusion, but that didn't work.) My neurologist here and those who arrange appointments for the Mayo neurologist I should see said that, after reviewing my records, the doctor will agree to meet if he can truly do something. I was also told that, after seeing the doctor and doing whatever was essential, I'd be told what treatment would be recommended and I could do that back home. (You or others get those two conclusions too?)
So, I'm scheduled for next month and the trip there naturally won't be cheap. Plus, my wife thinks that I haven't thought through everything and that risky, experimental or low-percentage treatment will be the recommendation. The Mayo online patient site shows my appointment with the tests the neurologist wants me to have while I'm there. Many if not most are the same tests I had over the last 6 months (MRI, EMG, others), so I'm pushing back that I don't want to repeat the same tests just to give Mayo money. I'm now awaiting a response from the neurologist about this and am starting to get uncertain if going will be the ultimate solution for me. I'll only want to do procedures or treatment that have been effective for those who have the same thing I do.
I don't want to go on blind trust and invest time and money to repeat the same tests in the hope that this'll turn out right. Are you or others stuggling with the same issues of repeated tests and uncertainty about the outcome?
-
Like -
Helpful -
Hug
1 ReactionHow did you get in to Mayo? My HWP and I have been patients for years and have been trying for MONTHS to get in. We have tried all three locations and everyone seems to be dropping the ball. I am so frustrated and disappointed.
I would go to an intergrative medicine Naturepath Dr., I have two family members who finally got their diagnosis with this approach. My one daughter had every diagnosis in the book thrown at her with horrible medicines. The ND found she had parasites sucking the life out of her, after a year treatment she is a new person.
I would try a ND first. You've had all the main stream testing.
My husband was on all of the medicines with several diagnosis. He is now taking Sole Salt , was once a day, now once a week, other nutritional vitamins, B12 being one of the most important for brain health. He is still using a walker but other symptoms have improved.
I'm so sorry. Has a diagnosis and effective treatment been found since you posted this? I have fibromyalgia, a child with PANDAS, and an inlaw with parkinson's. I have met other parents of kids with PANDAS or PANS, who they themselves have developed a movement disorder, or one of their other kids did, often after an infection. One resource that may be helpful is the Neuroimmune Foundation (neuroimmune dot org). I believe they had a movement disorder specialist speak a recent conference. MS is even now thought to result from epstein barr virus. I actually think there is some common link among all of these conditions, likely genetic, that predisposes to post-infectious issues.
-
Like -
Helpful -
Hug
1 ReactionHello @kerryberry and welcome to the Parkinson's support group on Mayo Clinic Connect. You and your family are certainly dealing with a lot of neurological problems.
As I was unfamiliar with the diagnosis of PANDAS, I did some internet research and found this information for others, like me, who are unfamiliar with it. Here is a link to the information,
https://my.clevelandclinic.org/health/diseases/23553-pandas-syndrome
If you are comfortable sharing more, how long ago was your child diagnosed with PANDAS? What type of specialist diagnosed this? Were there scans, or blood tests that revealed this or was it diagnosed by ruling out other possible disorders?
-
Like -
Helpful -
Hug
1 ReactionThank 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.
-
Like -
Helpful -
Hug
1 Reaction