Parkinson syndrome

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.

11 Replies

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  • Hello hedier7

    First find another doctor for a second opinion.

    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.

    parkinson.org/sites/default...

    Diagnosis

    There is no definitive test to detect Parkinson’s disease or Parkinsonism. For diagnosis,

    doctors take a thorough medical history and may request a number of movement tests.

    Because of the observational nature of the diagnosis, Parkinson’s can sometimes be

    confused with Parkinsonism, and the diagnosis may need to be revised over time based

    on speed of disease progression, response to medications and other factors. All the

    Parkinsonisms have a loss of dopamine, so a DatScan cannot be used to differentiate

    between them and idiopathic Parkinson’s disease.

    Treatment

    There is overlap in treatment for Parkinson’s and Parkinsonisms. Dopaminergic therapy

    (the first line treatment for Parkinson’s) can be effective in some Parkinsonisms. Other

    common treatments for both Parkinson’s and Parkinsonisms include physical,

    occupational and speech therapy; antidepressants and botulinum toxin (Botox) for

    dystonia. For all the conditions, health care providers aim to treat the symptoms that

    most affect a person’s quality of life.

  • Thank you for your answer.

    Just one reply right now ..À scintigraphie is à brain scan which mesures the loss of dopamine neurons.

    Will read your article attentively.

  • Hello,

    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.

  • if the pills helped keep taking them..i know i would..

  • There is the Dat Scan which tells you how much dopamine you have lost. That test decides if you have Parkinsons or not

  • 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.

    Thanks a lot for any suggestions you might have.

  • 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.

  • did this doctor tell you which form of Parkinsonism he thought you had? MSA, PSP, CBD etc.

    Get a second oppinion and be sure to find out which of these the Doctor thinks it is. You can get a lot more info once you know more.

  • Thank you for the information. I definitely have to find another doctor..... Nobody ever talked to me about the different kind of Parkinsonism.

  • Hedier,

    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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