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Old 01-14-2013, 01:32 AM
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Fowki Fowki is offline
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Fowki Fowki is offline
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Join Date: Jan 2008
Location: Southern California
Posts: 102
15 yr Member
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Quote:
Originally Posted by Evonne View Post
Thanks for your empathy. I am sorry to hear that you are suffering as well. I have a lot of fasciculations myself, but my EMG didn't show anything rare like ALS. The fasciculations are a nuisance for sure. I hope that you get to feeling better soon.

As for me, I have been posting in the PD forum, because I think that most of my symptoms are most like PD. I saw two doctors within the last week and a half that both felt that my diagnosis of Fibro was incorrect. Mainly based on the tremor and cogwheel rigidity that I have. Those things are not consistent with Fibro. So, for the second time in the past year, I have gone back on PD meds. This time, the doctor gave me the best medicine there is for PD...the "Gold Standard". I have only been taking one pill a day and it is in the early morning. I have noticed that I have been less shaky and that my stiffness seems to improve when I am on the medication. It is as if a calm just sort of comes over me and the internal shakiness that I have described since the beginning of this seems to go away. By mid afternoon, my symptoms seem to get a little worse again. My thought is that gradually the doctor will increase the dose up to multiple times a day until we see more improvement. If the meds don't seem to help much, then it means that I probably don't have PD and the search for what is really going on inside of my body will continue. I am not going to give up until the right doctor finds out what is wrong with me. Hopefully, the answer will come sooner rather than later.

Thanks for your response...and hang in there!

Hi there!!

I have PD and was curious what medication you're on that your doctor is calling "the gold standard"....if it is Carbidopa/Levadopa (Sinemet) and you're having a good response to it (which it sounds as if you are), then you have PD. Sinemet will have no effect on any other disorder. It is exclusive o PD treatment and has no "off label" uses.

Good luck, and keep in touch!

Kim
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Kimberly M. Fowler

Each player must accept the cards life deals him or her: but once they are in hand, he or she alone must decide how to play the cards in order to win the game.
-- Voltaire


dx'ed w/Young Onset Parkinson's Disease May 2006 at age 43. Symptomatic since 1997 or earlier. DBS June 22, 2010

dx'ed w/TN on right side 2007. GK x4, last GK 02/2013
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kerryelaine100 (01-16-2013)