Newbie's BFS Story

[ristinaL91]

Hi, I am new to this site (sort of, as I looked at it a year ago, but never posted till now)

I had an episode of BFS 15 years ago, I cant remember how long it lasted, but I remember being scared to death. I had no internet then, so I went to the public library and read antiquated medical books...thought I had MS...the twitches went away for 14 years (with the exception of an occasional eye twitch)

Last Oct., they came back with a vengence...they lasted 2 months or so, this time I had the internet, and immediately diagnosed myself with ***,went to my GP who did some routine tests and didn't even send me to a neuro. They lasted about 2 months , then went away completely again?/ I laughed at myself for worrying.

WELL, they are back. This time with cramps in the fleshy thumb pads of my hands...so I read on an old post on here that says it will start in the hands with cramps and weakness...Hey I have that. YIKES!!!!!

Also it says the calves are the most common in BFS, I get everywhere else, but rarely calves??? Is this a real bad sign. I am too scared at this point to even go to a neuro yet. Can't seem to make the appointment, as I feel the longer I wait to get bad news the better. I would love good news of course...but I am scared I wont get it.

I would love to know what anybody thinks of the twitches coming and going like that??/ The 6 monts or so this year without them, I felt great. And was actually exercising and feeling better than I had in a long time. Now I am a wreck again.

Do you think that *** would stop like that for months or even years at a time with a feeling of strength???

I feel like a fool posting this, but so many of yur posts have been like a God send to me, and I am looking for someone to give me their advice and input.

Thanks so , so much

 

[syoung1959]

Hi ristinaL91,
First of all, welcome to the group. Secondly, calm down and think about your situation. You have twitching that comes and goes. My understanding of *** is that if there is no weakness associated with the twitching then chances are it is benign. If you did by chance have ***, it would not come and go. It is progressive and would just steadily get worse as time passes. I don't know that just because your calves aren't twitching rules out BFS. I know that it is common for calves to twitch but I can't imagine everyone is the same. To ease your mind, you need to see a neuro. I know I was scared to death when my twitching started 7 months ago, but seeing the neuro was the best thing I did. If nothing else, it will put you at ease and rule out all those possibilites your mind has come up with. We have all done it and it is scarey. Stay strong and you will work thru it.

Steve

If anyone sees something that I am mistaken about feel free to correct me. I am by no means a expert on any of this.........

 

[Diego4Life]

ristinaL91, ALS does not wax and wane or come an go. That is fact. It is relentless and progressive.

My twitching started around 10 years ago and after about one year calmed down to a level that I hardly noticed. Last Feb, the twitching came back with a vengeance and I went through the whole panic thing again. I saw a neuro who told me no way after 10 years could be anything sinister.

If you are really worried, and you don't get the reassurance from us, then please don't let it build and build so that you become obsessed with it. Go and see your GP or neuro and let them tell you. The worse thing is to focus on this. Nip it in the bud now. That's my best advice.

Kind regards,

Diego4Life

 

[totaltwirls]

Diego4Life, I totally agree.

ristinaL91, when my symptoms began this past spring, my life revolved around the constant worry (and the internet searching). It brought my everyday living to a complete halt. There is so much outdated and incorrect information out on the web, it is enough to send the most sane person completely through the roof. I went and requested testing, my neuro said all was clean and wrote benign fasciculations down on a piece of paper, handed it to me and said if I had the urge to search the web, look this up. That is how I found this site and these wonderful people. Try and relax and make the appointment for your own sanity, trust in me and this forum. )