Posted by: bibmomma | July 23, 2012

A Blessing….But Still a Kick in the Gut

Wow, after a long, protracted wait, we FINALLY have the Neupro patch back on the market for those with RLS and PD to purchase in the United States.  I feel like this has been too long of a wait for those who have needed this drug.  I am so grateful that the FDA finally saw fit to approve the distribution of Neupro in the U.S.  It’s really political nonsense that kept it off the market for so long.

Well, enough whining about Neupro.  I have news…and I have a mixed reaction to my news.  The Neurologist asked the Radiologists to review my DAT scans of my brain.  They have decided I don’t have degenerative Parkinson’s Disease after all.  I am so weary of the back and forth that I can hardly be joyful about this newest diagnosis.  The decision is that I have Dystonic Tremors…and I’m not sure what that means for the long run.  I still have the tremors in my right arm and leg and I stiffen up, which affects my balance.

I guess I should be jumping for joy at the latest diagnosis, right?  And I am grateful for the news that I don’t have this degenerative disease and what that holds for the future.  But something tells me that Dystonic Tremors doesn’t answer all of my symptoms.  There have been too many different things over the years….and I can’t justify that they have been psychologically induced because I don’t want to have PD.  Never did want to have PD, but just took my doctors at their word…and there have been three Neurologists over the years.

So, I’m at a crossroads here.  I am still interested in new developments and finding a cure for Parkinson’s Disease, even if I don’t have it.  I’m still hoping to give good solid information about the progress in research about the disease.  And I hope that this newest U-turn in my own path doesn’t give me less credibility with my readers.  I am still praying and hoping for a cure.  Too many of you fight the good fight everyday to live a “normal” existence with the most insidious disease, Parkinson’s Disease.

So, for now, I want to remain on the front of the fight with you.

Alice – Bibmomma

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Responses

  1. Wow! That’s great news… probably. It does sound more like a symptomatic description than anything that “they” know much about. I do hope, for your sake, that it’s not progressive.

  2. Hi Alice,
    Could you tell me what your DATscan look like? I too have been told I have Parkinson’s due to this test, but other neurologists have said not. Apparently the images are supposed to look like commas in a healthy brain; mine were more like periods. And yours?


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