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Old 08-31-2008, 05:49 PM #1 (permalink)
heatherjoy
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heatherjoy
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Default Reason for Concern? Long Sorry- New

Hi,
My name is Heather and I've been reading this forum for several months and want to say what a terrific, helpful site this is! I've had "MS" like symptoms on and off for over 25years, and along with those I've had "widespread" fasiculations. I've wasted a lot of time worrying myself sick over MS (pre-internet, so wasn't aware that the fasics could be ALS). I've been blessed that most of the symptoms disappear for long lengths of time, but when they reappear, with the twitching, I usually have a new symptom or two with them. Then, I start the "worry cycle" all over again. This time, back in November, along with the twitching starting again, I started having frequent "sleep starts". When I fall asleep, I immediately wake back up with a jerk of the arm, leg, foot, hand and sometimes individual areas of the face. I went to a neuro who has scheduled a sleep study which is in a week.

I also mentioned to the neuro that I have had widespread and localized twitching on and off for over 25 years. He reassured me that it is BFS and not to worry. However, now I'm not sneezing and freaking myself out that I'm a "rare" BFSer who has the beginnings of ALS. I really didn't notice that I wasn't sneezing until I read it as a symptom of ALS; I've always sneezed more than the rest of my family and now they're all sneezing and I don't sneeze at all, (I've noticed this for about the last 6 weeks). If I feel the urge, I can initiate a sneeze or two or three by poking with my nail at the area below and outside my nostril, kind of like irritating it as would would tweezing a nasal hair, (sorry about being a little graphic)! Would I not be able to do this if my lack of sneezing was due to ALS? Also, at times, I feel I have a hard time pronouncing words and some difficulty swallowing (these 2 symptoms have come and gone, along with my other BFS symptoms but have had them only the last 10 or 12 years, at least that I've noticed.) I'm praying they're just anxiety induced; I also have severe GERD but read that causes another type of swallowing difficulty, not high up in the throat like I seem to get--way too much internet reading!) I'm so sorry, I know I must sound crazy, but I'm frightened and have been obsessing so much lately.

I've always had normal neuro exams, so never an EMG but MANY normal MRI's. I really don't want an EMG at this point unless absolutely necessary, as I'm 56 now, have arthritis from two severe car accidents, carpel tunnel, etc. I'm sure any abnormality would worry me more. I read your posts and you are such kind "together" people---I believe I've become borderline nuts worrying on and off all of these years. If anyone could kindly tell me about the sneezing I'd appreciate it. I know "I'm close to the edge" now and need to seek counseling as well. I've felt so alone with these symptoms and this fear of "not knowing what's wrong with me" for so long. Intellectually, I know how fortunate I am that whatever's going on hasn't physically disabled me yet but emotionally I'm a wreck. I apologize for the length of this and for how crazy I must sound. Thanks for any input you may have!
Heather p.s. I've also been diagnosed with fibromyalgia, (I have a lot of pain and have for many years); I'm not sure I believe that fibro is a real illness.