Anyone twitch primarily in one area?

BFS Online Support Group

Moderators: JohnV, Arron, garym

Anyone twitch primarily in one area?

Postby Katie on September 7th, 2003, 12:31 pm

Hi to all,

I have been here, on & off, for the last 8 months. I started twitching all over back then-- some days worse than others. Then I decided to forget about it [with the words & support from everyone here] and I got better.

In the last few weeks, though, the twitching is back -- but just mostly in my left foot and ankle. Sometimes I can sit and watch the skin under my foot jumping. Some days it's quieter and other days, like today, it's just out of control. I also feel this weakness -- is it "perceived" weakness? -- I don't know. Some mornings I wake up and I could swear my lower left leg & foot are weak. Then the next day, or later that same day, it's better.

Recent neuro visit said everything was okay -- the doctor said he isn't worried. I'm having another EMG next week [had one 4 months ago]. He said to do it just to be sure.

Other than this, I do have trembling now & then in my hands -- that also comes & goes. It seems worse later in the day and usually when I press against something. But it's not constant. And on & off tingling in my left foot. Oh, and I almost forgot -- fatigue! Sometimes bearable, other days I just want to lie down all day and sleep, or try to.

After extensive bloodwork a few months ago, I found out that I have had Epstein Barr in the past -- apparently it's one of those things that stays in your system and could reactivate. I've also wondered, beside BFS, about fibromyalgia, or some autoimmune disorder. This all started when I had a baby one year ago. I never had any neuro issues before. I have read that autoimmune disorders can be triggered during postpartum periods -- the connection is just too obvious since tremor and twitching [along with tingling and numbness] started 5 weeks after I delivered my son.

Lastly, the biggest monster in my closet is the fear of MS. When my foot is really twitching and tingling [I'm still trying to decide if this is from pain that I have in my lower back], and I "feel" this weakness on & off, along with major fatigue, I really do wonder if it's not all related to MS. Then that cycle starts -- the fear sets in and I feel like my life is over. I hate when my mind goes there. And MS can be so difficult to diagnose -- it can take years to figure it out. All this worrying is not good. And there are times when I let it all go and I'm okay, but inevitably the symptoms come back or get worse, and the fear starts again.

Thanks for all of the support here. This board is a Godsend. I can relate to so much of you here.
Katie
Katie
Senior Member
Senior Member
 
Posts: 68
Joined: February 18th, 2003, 4:29 am
Location: New York, NY

Postby Jenn311 on September 7th, 2003, 5:28 pm

Katie,

BFS can come and go. Ask any long-term BFS sufferer and they are likely to tell you about the same experience. Just because it comes back from being in remission doesn't mean that it has become something else. One EMG should be more than enough to convince you it isn't ALS, but if two will make you feel better, then go for it! I'm sure the diagnosis won't change, but if it does help the psyche then it is worth the pain and expense.

As for the perceived weakness...that's all it is. If it were real weakness it wouldn't come and go. That is a very common symptom of BFS. Just this morning I was going through the clothes in my closet when I thought my arms would fall off, they felt so weak and they were burning! But now they are fine. Chalk it up to BFS.

If at some point you wake up and you can't feel your leg, or move your fingers, then start worrying about something other than BFS. Otherwise you are wasting precious time that you could be spending enjoying your son. The less you worry about BFS, the less you notice it.

Good luck....

Jen
User avatar
Jenn311
Saint
Saint
 
Posts: 681
Joined: April 4th, 2003, 3:26 pm
Location: Central Texas

Postby Katie on September 7th, 2003, 9:46 pm

Hi Jen,

Thanks for writing. Do you ever have any pain -- like cramping? I've got that in my leg a lot. I know you mentioned burning -- I have never had that.

I'm more worried about MS than ALS. I know that the EMG doesn't test for MS, and I'm not really jazzed about getting another one, but since my leg & foot symptoms are worse, I thought it wasn't a bad idea right now.

Thanks.
Katie
Katie
Senior Member
Senior Member
 
Posts: 68
Joined: February 18th, 2003, 4:29 am
Location: New York, NY

Postby marieclare on September 7th, 2003, 10:50 pm

I have had BFS for SIX yars and my first year was a living hell--two EMg's also-and all the symptoms and fears you are describing... the second EMG will help your mind for a while and you will constantly think it could be something else--i've been there--its NOT anything else==i just found this forum a month or so ago and i feel so much calmer from all the exeriences people post and all the really nice people who respond to questions...I honestly feel my mind calming down somewhat and i am going to FORGET about it all--even when the twitching keeps tapping me on the shoulder, leg , eyes, etc to remind me!! Calm down, you will be fine!!
marieclare
marieclare
Selfless giver of time
Selfless giver of time
 
Posts: 149
Joined: August 15th, 2003, 10:22 am
Location: dallas exas area

Sponsor

Sponsor
 


Return to The Support Group

Who is online

Users browsing this forum: No registered users and 7 guests