Recently Diagnosed..Asked to try new drug

Information about how to manage or reduce the severity of BFS symptoms

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Recently Diagnosed..Asked to try new drug

Postby content on March 8th, 2004, 5:55 pm

:(
After more than 20 ears of random fasciculations...I finally bypassed my internist and the most recent neurologist he referred me to and went to The University of Chicago for a second opinion. That was last Wednesday, 3-3-04, and the first time I've heard of BFS and or that I might have it for that matter. Everything I 've seen on this BB fits me completely, including perfectly normal MRI, EMG,EEG, Bloodwork etc. I must admit the word might still worries me though. I wish someone could commit to a definite diagnosis and once and for all say you do not have ALS...rather than we can rule out ALS for now. What prompted me to seek the second opinion was the fasciculations have gone on now 24/7 in my calves, the instep of my foot, and the tops of my feet for over 8 weeks. The neurologist at UIC suggested I try a drug called Mirapex,(pramipexole), which is used on Parkinson's patients. He said it has been effective in relieving symptons especially during sleep, (or non-sleep in my case). Is anyone aware of this drug? If so...what are your experiences. I am apprehensive to take it because of a myriad of side affects.
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Postby uber on March 8th, 2004, 6:10 pm

Hi Content...like you ive had a clear MRI, EEG, not had a clear EMG as neuro has never really thought the need to give me one. Those words they always give you "you might not have this" and "it rules it our for now". I think what you have to understand that even if a neurologist was 99.9% certain u didnt have a condition he still wouldnt say 100% you didnt have it...that goes for practically any condition...even viruses that can be ruled out via blood tests etc. When my twitching started I was worried about HIV which gives a 99.9% gurantee if you have HIV or not providing you get the test within a certain time after contracting the disease...even when it came back clear the nurse still would not give me a 100% gurantee I was HIV negative. All I was getting was the typical "the tests show no indication of HIV" same with the MRI I had my neuro just kept saying "a clear MRI vietually rules out MS" but when I asked for a 100% gurantee I didnt have MS all he could say was "the tests dont indicate it". They do this to cover their backs for insurance purposes.

With regards to your condition, ive never heard of Mirapex...does your neuro suspect you have parkinsons?? or does he just think the drug will help?? of course you do know that in some cases of early parkinsons they can present similar to BFS. Maybe he wants to put you on Parkinsons medication to see how you respond to it.
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Postby Pole on March 9th, 2004, 3:02 am

Hello content

I have been twitching for almost 1 year now. I don't know why, I'm not sure that's benign but one thing I'm sure - if I would twitch for 20 years I would forget about ALS. ALS is a fatal condition which kill people in 2-5 years. If you're still alive and if you don't seat in a wheelchair you really don't have it.

regards
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Postby content on March 9th, 2004, 11:13 am

Thanks for the encouragement Pole...my twitches have become constant and more severe and that's why I began to worry about ALS.
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No Parkinson's suspected.

Postby content on March 9th, 2004, 11:20 am

Hi Uber. No he doesn't suspect Parkinsons at all and that's one of areas he specializes in....maybe that's why he likes this drug. He said it has shown to alleviate symptons in some BFS and RLS sufferers. By the way, Uber, I've read many of your posts at this site and all I can say is thank you. Your knowledge, understanding and perspective have really helped me to feel not so isolated. Some times the fear and anxiety is overwhelming. Thanks.
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Postby StayingAboveIt on March 13th, 2004, 6:19 pm

I would have to agree that after 20 years ALS is not a real possibility...
I am pretty sure that if ALS caused your twitches 20 years ago...you would be in really sorry shape now (or worse).
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Postby Arron on March 25th, 2004, 7:20 pm

The reason why NO doctor can "guarantee" you don't have anything is two fold, 1) becaue they have to cover their butts legally, and 2) because ANYTHING can happen in nature, and who's to say that you couldn't come-down with ALS the next day? NOT that it would be even remotely related to BFS what so ever the day before, so don't go freaking out.

But just like winning the lottery, although it is rare that anyone wins, there are the percentage that do get the lucky numbers. Well, bad luck can be just the same way, and even though you have no reason to be afraid of an extremely rare condition such as ALS, ANYONE "could" get it at ANY time, and NO doctor is willing to legally bind himself by saying you DEFINATELY do not have it, or that you will not get it, or Cancer, or AIDS, or Herpes, or whatever you are asking at that particular time. The ONLY thing anyone can guarantee in nature is death after life.... and that's about it. Hopefully, the latter happens much later than sooner though :)
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