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Old 10-22-2009, 09:33 PM #11
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Evonne Evonne is offline
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Join Date: Jun 2008
Location: Eastern Washington State
Posts: 169
15 yr Member
Evonne Evonne is offline
Member
Evonne's Avatar
 
Join Date: Jun 2008
Location: Eastern Washington State
Posts: 169
15 yr Member
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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!



Quote:
Originally Posted by dbw52 View Post
Wow when I read your post I could feel your frustration and with a lot of empathy. I have been suffering with some of the same symptoms and have had just about as many test as you and have had a neuo diag me with benign fasciculation syndrome. It is very difficult to live with. I also have developed anxiety over the whole thing. I also have floaters in my eyes and blurry spots to boot. Arms go numb, cant sleep well and could go on. I just wanted you to know you are not alone and I hope with as much hope a human can have we find a solution.
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