Twitching, Cramping and Jolting--Dont Panic

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ristinaL91

Well-known member
Lacy Rose,

Don't panic..it is just bfs. I had all the crazy hand twitches for months. I barely could use my right hand...it was twitching and cramping, and jolting. Now a year later it is fine?

Hang in there. Do a lot of reading at this site...now that youwent to the Dr. and got the all clear...You will see all of your symptoms are shared by people here.

ristinaL91
 
Well honestly, I think I can handle it....bleeped out or not. *laughs



So here's my question....how do you all handle your anxiety over this? I sometimes will spend HOURS on this board trying to reassure myself. It seems obsessive to me, but it helps me....

What do you think?
 
LacyRose:

I ordered my last neuro visit records (which was at Mayo Clinic) and have them handy. When I get to feeling the anxiety demon creep behind me, I whip'em out and read them. It specifically states on my med records the I do not have ALS, MS or any other MND.

Then I read the part where it state that I have GAD and that if I were to get meds (buspar I'm on), exercise (lacking) and sleep (lacking- which I think is NOT a symptom but the cause like they think it is in fibro) then I start to relax. I should post my med records transcript on this site and let everyone read what Mayo has to say about benign fasciculations- my neuro wouldn't even call it a syndrome. She told me that I have anxiety and it is causing lack of sleep and twitching.

So here's to you Ms. I keep thinking I'm dying hypo.... ;)
 
twitchy! You are too cute!

My neuro gave me the option of having an EMG to put my mind at ease, but I defered to her judgement of it being not necessary...but sometimes I wish I had the definitive proof that I'm not slowly deteriorating!!!

I have a follow-up in two months, and she said we could do one then if I wanted, but...euch, who really wants those needles stuck in your body??

I'm a little on the "cuddly" side, so I'm afraid they would have to be longer needles. *laughs.

At any rate, my faith gets me through...but it's really tragic thinking that some people actually do come out with an *** diagnosis, and it's tough to imagine having to deal with that, so sometimes I feel like I shouldn't be so excited to not have the typical weakness and maybe just lift up a prayer for these folks who DO have it.

Why do
 
Even though you didn't have an EMG consider ordering you records. It's AMAZING what they (the neuros) say about the patient that wasn't mentioned/discussed with you in the office visit- or at least with my situation. I'll give you an example... They never once mentioned GAD, but it's mentioned in my records- and that is what I ended up being dx'ed with via pyschiatrist. Other things they said, just can't think of them right now.
This is just a suggestion- I know it has helped me.

Smiles,

Vanessa
 
LacyRose

Welcome!!! I am glad that you have found this forum useful. We are all in the same boat, life boat being rescued by BFS.com. I too am so thankful for this website! It saved me in the midst of my anxiety and fear over what this twitching could be!! I am at peace now, knowing its just odd and a mystery.

Tammie
 
Thanks Vanessa. :)

I think I will do that...I'm actually going back to my GP to have a follow up blood test on my thyroid that was borderline high. I don't think the thyroid is causing the twitches, as it's really quite borderline, but we'll see.

I always am curious as to what they write down....Doctors really should be more disclosing. They do things, and I have no clue why or what it means, or if I checked out ok. I had to ASK my neuro if I passed my exam. *laughs. She smiled and said 100 percent. Why couldn't she have just TOLD me that in the first place!

I have the lump in the throat issue b/c of anxiety, but was FER SUUUURE it was bulbar onset....she smiled at that one.
 
I chuckle when I think about the moment that I was DEAD DOG convinced I was dying of ***. I mean, it's honestly not funny, I still freak out sometimes...but no doctor in the world, not even a leading specialist could have told me otherwise.

What's with my brain!!!
 
Hi Laci
Before i found this board. I slept on the coach in the basement paralized with fear. I just couldnt sleep on the same floor of my house as my husband and children (go figure) i needed to shake and i shook my myself in the basement. The fear was so magnificent that at night my body shivered in unbeliveable shakes. and this was all while visited 6 nerologists in the matter of 2 months. I was convinced that they just thought i was too nice and didnt look like the person with ***. so they surely missed it. But the only thing that made me survive that time was to keep a copy of my records from each nero visit. I read over and over the words. "no evidance of motor neron disease" and this somehow helped to see it on paper. You can joke about it and have found us very early on. I was twitching for 2 months before I came across this board and i felt lonely and thought that i was definitely the only person in the world to have this symthom attached to the most devastating disease in history. Be well and keep on board. there are some wonderful personalities here and all will give there all when there is a friend in need.

regards,

Chris
 
I so understand where you are coming from....I really do.

I've been imobilized with fear so many times...just trying to deal with these ambiguious symptoms. Right now, for some reason I have a hoarse throat, and I'm fighting evil creeping thoughts of bulbar onset...not to mention I have the "globus hystericus" thing going on. (lump in throat) AND have had frequent tongue twitches. No wasting, no atrophy, nothing indicative of a MND, but still, the fear lingers.
 
Your hoarse throat and feeling of a lump could be due to reflux, I have had this before and a little Zantac made it go away.

Globus hystericus sounds quite atrocious really, doesn't it. Medical terminology always sounds terrible, even for benign conditions. Perhaps if we used alliteration they would seem less daunting; such as:

fantabulous funny Fasciculation Syndrome...

Marvellous Mitral musing valve prolapse, and then throw in a sung fa-la-la-la-la

Cheers,
Basso
 
LacyRose, I too find myself going over and over this site looking for some sort of "breaking" news to explain my BFS symptoms, and I still unfortunately hesitate to say BFS, even though my neuro has said "well, we can never be 100% sure, but you DON"T have ***". Anyhooow, I find that for myself reading over this site helps reassure me and also my emg, mri, and exam notes helps to reassure my neurotic mind. I've also found that my friend corona during the evening hours as well as seeing the smiling faces of my kids when I get home takes the stress away, well, just for a bit.......

Patrick...
 
Oh Patrick, don't I know it.

I think what we can know for sure is that we are okay. But in order to remain positive and BELIEVE we are okay, we do need support and reminders and positive dialogue.

I find the most difficulty in trying to convince my husband that these things are really happening to me, and while I know I should just blow them off, I simply cannot.

His patience wears really thin....*sigh
 

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