know neurologists the difference between the twitches?

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know neurologists the difference between the twitches?

Postby uben on May 7th, 2003, 11:34 pm

Hi,

I am glad that I found this site which gave me a lot of information about BFS. Especially the difference between the ALS and BFS twitches are interesting and I feel less nervous because my twitches are exactly as
described here on these sites - more typicall BFS twitches (random, visible, last only seconds and not constant). I have already seen 3 neurologists and not one of them mentioned BFS, and as such, they did not also explain the difference of the twitches between BFS and ALS, although I asked them if I have ALS. In my opinion they didn't know the difference of the twitches. The appointments with the neurologists were before I found this site so that I was not able to ask more directly. Monday I have an appointment in the University Hospital - maybe they have more knowledge than the other neurologists I saw.
My question is: I am from Germany and would like to know from other readers from other countries (specifically USA, UK) if their experiences with neurologists are similar to mine or if their neurologists were able to diagnose immediately the symptoms as BFS and if their neurologists were able to explain to them the differences between the ALS/BFS twitches?

Thank you in advance for sharing your experiences with me.

uben
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Postby reneeintx on May 8th, 2003, 12:53 pm

uben,

I went to a movement disorder specialist(a neurologist that specializes in parkinsons, als, ect..) He worked in one of the US's top ALS clinics for 3 years. He worked under Dr. Stanley Appel at the Baylor College of Medicine. I'm not bragging or saying mine was "the best" I'm wanting to convey this Dr. sees ALS on a regular basis. From what I understood from him, the difference in the twitches mainly relies on the EMG findings. Regular old "bfs"twitches are different from the ALS sharp postive wave patterns shown on the test. When I had the EMG he administered it and interpreted it for me at the end. You see I'm one that was twitching at the time of the test but the EMG showed no twitches going on. He said there was no fasciculation's on my test??? He said if he didn't see them there then I wasn't having a "true fasciculation"..whatever that means. He said he can definately tell a regular fasic from a suspicious one. If he finds something suspicious he goes on with further testing to confirm or deny an ALS diagnosis.

I hope your up coming appointment answers your questions.

I too have roaming twitches that don't stay in one place too long. They also are there more upon waking and when resting before bed. Mine are visible.

Let us know about your visit,
Good luck to you.

Renee :)
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