I have been treated with Levodopa 100g up to 5 tablets a day for the last 2 Years. My Neurologue had me undergo a scintigraphie one month ago and the result is that I do not have Parkinson but a Parkinson syndrome. He told me to stop all medication. The result is that I have difficulties to walk like 2 years ago before taking the medication. I will not see my Neurologue before 6 months!
I am completely lost!
Maybe somebody can explain a little bit more. Thank you in advance.
Written by
hedier7
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Is scintigraphie a scan. If so what kind is it. There is no scan that will diagnose Parkinson's or rule out Parkinson's. The only true way to diagnose is when you die they dissect your brain. Did the meds help you if they did i would keep taking them. A lot of people have Parkinson syndrome and use the meds.
I just read the article Parkinson's Disease vs. Parkinsonism, very interesting.
I completely ignored that there was a difference between Parkinson's and Parkinsonisms. My doctor never explained it to me. When they did the Brain Scan and the doctor told me that they could not find anything, I thought that I would go back to a normal life. WRONG!!! The only thing my neurologist said that it would come from my spine (narrow canal) operation two years back.
Thank yo very much helping me to understand a little bit more.
Herewith the translation from French into English of my Brain Scan and the reason why the neurologist had it done
"Lumbar laminectomy with arthrodesis, hydrocephalus but passive
Brain scan at DATSCAN within normal limits
No dopaminergic loss suggestive of Parkinsonian degenerative disease, in particular no attack of the left striatum which can explain the right akinesia
"
Maybe someone on the forum has more medical knowledge than me and can explain it. My doctor did not explain anything to me, he only gave me one tablet of DIAMOX 250mg for the next 6 months....The only thing that I know that I am having great difficulties to walk and keep my balance.
Get a new Neurologist. I was, and now am again, taking sixteen 25/100 Carb/Levo a day for the past two years, I also was taking medication to help with sleep. Wth no special testing, and based on the conclusion of my Neurologist that I was doing to well for someone with Parkinson's, he had me stop all my medications. Two weeks later I was in the hospital nearly dead. Four months later, and I am just starting to get my life back, AGAIN! Be weary of those who forget that they are just practicing.
Thanks so much for sharing your condition here. It begs the question whether or not you have access to support groups at home or to PD nurses as we do in UK. PD nurses usually have a comprehensive knowledge of the whole range of symptoms, treatments & patterns of development of PD. They are usually bang up to date with current research & trials. My nurse told me at the outset 13 years ago that sudden changes rarely occur in PD but that even if they do changes in meds should always be taken slowly with your support team fully informed.
My husband was diagnosed with PD 15 years ago at the same time my girlfriend was. She passed away 5 years ago! My husband is still walking and most of the time (he has the beginning of dementia) is mentally sharp, and has trouble with speaking clearly. There are DEFINITELY different types of PD, in my opinion.
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