ALS or BFS

[TRW]

Been (33y)having widespread fascic for 2.5 months.Seen 3 neuro's;1 private practice,1 UNC,and the last one in the Duke MDA/ALS Clinic (Director).The PP Neuro gave me an NCV/EMG on the right leg, arms (it was an old machine not like the one at UNC/Duke).Anyway, he said it was normal.UNC had neuro exam,blood work including HIV, Lyme,thyroid,etc. all neg except my B12 was 238-UNC neruo said that a level below 400 is low to a neurologist so am taking b12 pills-UNC Neuro ordered EMG/NCV b/c of fascic but the Neuromusclar Spec at UNC completed the NCV which was normal then said that he felt like there wasn't a need to do the EMG since if I had ALS I would have shown signs clinically +on NCV he called the UNC Neuro & he agreeded no need for EMG.Went back to UNC for f/u & Neuro had never heard of BFS until he consulted w/another UNC older neuro who had never seen me but knew of my symptoms and he told the resident that he has pts all the time with fascis who think they have ALS but actually have BFS. Still not satisfied and got an appt.Duke in the MDA/ALS clinc for eval.neuro exam normal, had a comprehensive NCV/EMG done 2 days later on 11-26-02 at Duke (all 4 limbs, tongue, back, throat) NORMAL-going back for f/u with neuro in Feb. His initial diagnosis before the EMG was BFS(said that he has seen more ALS than I could ever imagine and this didn't look like ALS-even said that Neurophysiology docs would probably think he was crazy but better safe than sorry-gave me valium.Still having widespread fascis, intense cramping esp. calves, arms,now fingers cramp.Does this sound like ALS?

[scaredy cat]

TRW-

I do not think you have ALS. I am also afflicted with fasciculation - all over - for a few years now..as well as pain, cramping and burning sensations. I was also found to have a b-12 deficiency - about 94 - I know it really is quite low. I get monthly injections of B-12.

To answer your question - in my researching I have found that ALS presents itself with weakness at the onset of fasiculations. If noticible coordination (not just percieved coordination) is compromised concurrently presenting with the onset of fasics then it could be an indicator. Fasics alone is not a real indicator. Also - you've seen many doctors who have ruled it out.

I read an article by a doctor who was also presenting with our same symptoms - and he did research into finding out what was up. He also thought he might have ALS. I can't remember the article exactly but if you put BFS into a search engine the article should come up. It's an a good read and an interesting perspective.

I hope that calms your nerves a bit.

Good luck.

Scaredy

[CCF-Neuro-M.D.-JT]

Please keep in mind I have not personally examined you nor have I reviewed your clinical history in detail.  The normal neurological examinations and EMG studies are reassuring that this is unlikely to be ALS.  Usually, there should be some signs of weakness and wasting on exam as well as changes on the EMG that are suggestive of ALS by the time you have diffuse fasciculations and cramping. BFS is a strong possiblity. Keep your followup appointment in February and see if there's any changes in the symptoms and exam findings at that time.  A normal exam on followup at 6 mos should again be reassuring that it's not ALS. In the meantime, try the valium and perhaps some soda water.  Quinine is a medication that can help with your symptoms, but has to be cleared by your primary care doc first as it can induce cardiac rhythm problems in predisposed patients. It is found in soda water in small doses and may be of help. Good luck.