Rare Neurological DX: BFS

[papillon58]

hi there.i went to a neurologist who specializes in als at one of the nations leading hospitals yesterday. he performed the exam and dx'd me with bfs but is also checking to see if i have the antibody for something called cramp fasciculation syndrome. this is via a bloodtest ; the results of which will be back in a few weeks-- it is sent out to mayo clinic..it is an extremely rare thing--i cant remember if he has seen one or 2 patients with it-- anyway, while my emg was good-- only done on my right side-i am still anxious. perhaps because he told me to come back-- in 2 or 4 months-- i chose 4-- i am wondering why ?i have all over twitches and some minor cramping of the feet and calves from time to time-- but not that often-- i also have the dreaded tongue twitches and lip twitches-- they did not stick my tongue yesterday-- prob because the rest of the emg was fine-- i feel like i asked a lot of questions but now feel like there are so many i didnt ask.. today, when i should feel better about all of this, i really dont-- my lip is doing its thing and as i type this my toes and feet are going wild--it all is so scary to me-- i dont want to take too much meds because they make me drowsy-- i am not looking for any guarantees from anyone but i guess i am wondering why i should go back so soon-- anyone???

 

[LadyGaga]

Don’t worry. It’s typical. I have similar symptoms and neurological evaluation. They want to recheck you about every 3 month for a 1 year.

 

[TompeteA]

He may be concerned about the Cramp Fasciculation syndrome, It is my understanding that it is a real diagnosable neurological condition, although not life threatening it in some cases can be really severe and disruptive. Also, he has ordered additional blood testing and it makes sense to have a follow up anytime you have additional testing. At my first Neuro exam the neurologist told me I definitely did not have A"", but set up a 3 month follow up just to see how I was doing. I would not read to much into it, also the symptoms you describe are consistent with BFS. Did he actually diagnose you with BFS or just say your fasciculations where benign? I have seen 3 Neurologists and none have acknowledged the Syndrome of BFS.

 

[garymills]

Dr. Harati at BU ALS clinic in houston sent the same test for me to Mayo....I was negative. He said that it wasn't out of concern, but rather an attempt to find a specific cause for my BFS. Don't worry about it. The best news is that you got a dx of benign fascics.Take care,Gary

 

[papillon58]

thank you for replying-- all of you--to answer the question about bfs-- he did say syndrome-- i did see another neuro who said i did not have a syndrome....but benign fasciculation.... but i went for another opinion because my symptoms werent improving and the first neuro didnt seem to have an understanding about just how much i did twitch.... he just said "everyone twitches"....that may be true but not like this!

 

[ZekesTraveller]

Typical protocal. As a matter of fact they call you in every three months for the first year. You did not even make that. And they gave you a choice. Boy if that is not an indicator that your OK! Would you rather be picking out headstonesa or writing your will? What is there to ask? There will only be sxs treatment. Thats it. Ups and downs. You are reading way to much into this. Absolutly no need to ever stick tongue with all the other muscles already tested.Good luck and your OK. Well BCFS OK that is.

 

[papillon58]

you have a point there! gee-- that was a well deserved slap in the face-- thanks for that-- i will stop my whining

 

[cindyandco]

Do we have a new medical terminology here? That's it. We are all BCFS normal

 

[AllGoodHere]

My diagnosis was CFS but my neuro didn't do the test to check for autoimmunity - is that the one you were talking about? He said that only ~40% of patients with symptoms test positive and it doesn't matter because there is no remedy or fix-it-up Rx either way. Have you read Steve's pnhe site ( )? He describes the basis for this test so it may be of interest to you. My neuro asked to see me again in a few months also to see how I was and if the meds were working, etc so this isn't unusual. Write down your questions so you can ask your neuro - this is the best reason to go back for a follow up. We talk on the phone occasionally now when I have questions (much cheaper for me that way) and he still wants to follow up once a year. He likes seeing me - I think I am one of the few patients that he can joke with as I don't have any progressive awful disease and I'm always coming up with 'what ifs' since bcfs is still an unsolved case. SO what I'm saying - it is good to have a neuro that you can call when you need to so keep the appointments and the lines of communication open so he'll be there for you.Oh, the drowsiness - we tried variations that helped - like lower doses that overlapped at night so I could sleep better. Another thing you should ask about (neurologists are used to adjusting and trying new meds as they affect each person differently). Hey, don't let the twitches freak you. It's like walking through spiderwebs - when you know what they are and can see them in the light it's not half as bad. Irritating but not devastating. Hah, when I work in the yard now I never know if I'm have a weirdo nerve thing or if I actually have a real bug on me. You know enough now so see it for what it is; brush it off the best you can and get on with things in your life that matter to you. Good luck.