This topic contains 4 replies, has 3 voices, and was last updated by  Jean Mellano 7 months ago.

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  • #11143
     Jean Mellano 
    Keymaster

    One neurologist told me the most definitive proof of a PD diagnosis is that if you take dopamine (levodopa/Sinemet) and your PD symptoms vanish, that implies you probably have PD.  I have yet to take a PD medication (and I have tried Azilect, Ropinerole, Sinemet, Neupro) that gave me an ‘aha’ moment with total symptom relief.   The best symptom relief results I have seen in myself is no more internal tremors after I started Sinemet.  However, I still suffer from extreme fatigue, poor fine motor skills, not so great balance and bradykinesia.

    If you have had an ‘aha’ moment, what symptom(s) were improved and what do you attribute the symptom relief to?

  • #13712
     Helen 
    Participant

    Yes. After spending $1,960 on an experimental injection of Bydureon/Byetta/Exenatide I have now found an improvement in my general overall symptoms.

    Improvement:

    More ON time.
    Little or no Dystonia and Dyskenesia
    Depression still with me but I can overcome it by playing music I love.
    Little or none of light head and dizziness.
    More interest in my home duties.

    Problems are:

    Heavy sweating when using a small amount of energy…..hard to cope with that.
    Body still frail and prone to falls of which I have had many.
    Stick and Frame always close at hand.
    My toes don’t have normal sensations and feel numb. After a while I have to get my shoes off. The toes are twisting inwards.
    Had a wonderful 2 hours from 3.00am to 5.00 am where I felt completely Normal. Then I began to crumple and start on the days ration of Madopar. In those 2 hours I managed to strip the Queen Size Bed, remake it with fresh linen, wash and dry the linen all by the Dawn. Amazing. I said to myself I’m cured. Of course it was fleeting. I am optimistic that I’m on my way to a better retirement.

  • #13714
     Jean Mellano 
    Keymaster

    Helen I hope you have found your ‘holy grail’ in terms of alleviating your symptoms and possibly slowing disease progression.  Do you think your problems are side effects of your treatment or symptoms of your PD?

     

     

     

  • #13737
     chuck 
    Participant

    Sometimes when I slowly awake after a sleep I’m totally at ease with no tremor. This only lasts a very very short time.  Then the tremors start up, always , like getting struck with a bolt of lightning.

    • #13739
       Jean Mellano 
      Keymaster

      chuck, i am thankful i dont have tremors.  I am just soooo slow, have poor fine motor skills and just so fatigued all the time.  it has been over 3 years since I have felt what it is like to feel ‘normal’

      ‘\

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