BFS 4 years and counting-Scary new symptoms

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BFS 4 years and counting-Scary new symptoms

Postby slomenick on July 5th, 2012, 12:50 pm

Hello wonderful community of BFSers! I, like all of you, have been experiencing this stressful, scary, and annoying disorder for several years now. I have had some scary new symptoms that I would like your opinions on. But I will first share my story from the beginning.

I am currently 25 years old, female. When I was 21, I experience a strange twitch in one of my fingers. I ignored it, but it came back. I began to research this on the internet (which became an exhaustive search of my impending DOOM!) I was consumed with fears of ALS, MS, Parkinsons.. you name it, I thought I had it. Due to this stress and anxiety, plus lack of sleep, these annoying twitches began to spread. As many of you know, stress makes this WAY worse! I visited several doctors who were unimpressed by my symptoms and simply prescribed anxiety medication. But, as many of you know, once you fear you have one of these neurological diseases, there is not much anxiety medicine can do. You just HAVE to have the tests for your own reassurance. A doctor finally referred me to a Neurologist (though it just seemed like he was humoring me and really thought I was crazy). I went in and the neurologist had a similar reaction to the doctor... this is all nerves, you need anxiety medicine. WELL YES I was nervous as hell.. who wouldn't be if you thought you had something awful? After many reoccurring visits, he finally ordered an EEG (I think that is the name of it.. they put the little needles in all over and send a little shock)... it came back clear. He assured me.. no ALS. WHEW.. of course symptoms persisted (thank you BFS!) and my nerves continued to come undone. I went back and convinced him I needed an MRI to check for MS. He ordered the MRI (again I felt as if I was just being "humored".. so frustrating). Came back all clear.. doctor assured me.. No MS. Doctor assured me my fasiculations were benign (though he never actually diagnosed BFS) After this I was really able to relax a bit.. and I am happy to say that for the past four years I have been managing my stress/anxiety really well and, as a result, my symptoms have been quite calm. I still get twitches several times a day as well as some hot spots (usually in my big toe).. but for the most part my life has been back to normal. This is proof that BFS CAN be managed and suffers can go through periods of calm.

Now starts why I decided to post here today. I am going through a stressful time in my life and I think it is causing a major BFS flare up.. worse than ever before that I can remember. I won't go into all the details of how it started this time.. but I will list my symptoms that are repeats from my last flare up as well as the new (somewhat scary) symptoms I have been experiencing over the last 4 days. OLD symptoms: Twitches all over body.. both jerky and vibrating, internal tremor, fatigue. NEW scary symptoms... these are the ones I would like some opinions on.. because there is just something about knowing people are experiencing the same things as you and okay, too.. that makes everything seem so much better. NEW- Tingling(pinpricks) both hands (more prominent in the left) pinky, ring finger, and left of palm, shaking of hands and a sort of internal tremor of the arm (feels like it is shaking a lot more than it LOOKS like it is shaking), electrical current feeling through my body.. a little different than the internal tremor I've experience before, fingers on my left hand shaking side to side (this one is the most troubling as I feel like I have read something before where this is related to Parkinson's.. but I can't quite remember and refuse to look it up and make myself sick) it is worrisome because it is kind of just a side to side shaking in both my middle and ring finger (switches back and forth) rather than the jerky twitching I normally get in my fingers.

Thanks in advance to anyone who is reading. I have been dealing with this for a while.. and to any of you out there who this is new to... if you feel hopeless.. I PROMISE if you can learn to control your anxiety you can have periods of true calm and happiness in your life. Just breathe. :)
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Re: BFS 4 years and counting-Scary new symptoms

Postby Yuliasir on July 5th, 2012, 2:10 pm

Hi darling,
if fact in BFS complete and well organized antianxiety program is really a good thing, and very tight regular hours are really precious. Since you are stressed now (and I can feel that even from your writing, I meean from how you put the words together, even without reading that you are stressed now) - no wonder that your BFS started with new sensory and motion things.

Firts of all, remember that you are 4 years in that and still strong and alive.
Second, remember that your are FAR too young both for ALS and PD, since median age for those diseases onset is about 50-60. So stats are for your favor anyway. PD tremors are very specific, really nonstop and fine (like counting coins) and usually accompanied also with very specific posture changes due to muscle rigidity, suppose nothing like that happens to you.
There are meny fellows here who have involuntary motions of fingers as part of syndrome picture. My fingers sometimes (not often) also start to play that piano game...
looks like you experience ulnar neuropathy-like pucture common for many of us (me too)- not classic one with pinched nereve, pains and palsy, but rather related to hyperexcitability ( I consider the fact that 4 and 5 fingers are involved, which are innervated by ulnar nerve) - with pins and needles, weird finger movenents etc.

Hands shaking and internal tremors, involuntary overall body shaking etc. are well known anxiety and stress symptomes. I know that on myself, I am 42 years GAD suferer, and when I shake out of the blue like as somebody come and say BOOO! to my ear - I know I am really out of gas...

It is a precious knowledge you get for the last 4 years - that BFS sucks but never kills. Thanks for sharing it again, (I am only for 8 month in it), and I wish you to overcome your stresses as much and as soon as possible and recover back to tolerable or - better- great conditions
best regards
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Re: BFS 4 years and counting-Scary new symptoms

Postby jerry2 on July 5th, 2012, 2:54 pm

Apart from twitching (say hello to my new left side calf constant twitch from today) I also have a lot of pain in my hands and feet problem, night tremor of my hands (one, another or both), I have tingling, buzzing that had spread from feet to the legs and from the hands to armsa as well, changing locations. My hands get numb, painfull or tingling at night and sometimes at day. I have the electrical shocks like voltage surges sometimes (not visible) etc... I have sensory, pain and motor symptoms. I have all the symptoms for all the neuro diseases. I guess that ALL FOR EVERY DISEASE is a good sign others tell me. Parkinson doesn't start that way (it is a special kind of tremor and never at night), ALS doesn't present with so much sensory issues and MS has every symptom known to man, as does anxiety. I think you will be ok.
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Re: BFS 4 years and counting-Scary new symptoms

Postby KatieMG on July 5th, 2012, 3:20 pm

What you are experiencing is a lot of sensory symptoms that us BFS people can have. I have had all of those things you have described. You are 4 years in, so you know you are fine :D

We have a great chat if you want to check it out. There is always someone in there to talk things over!
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Re: BFS 4 years and counting-Scary new symptoms



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