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BoxersRule

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Hey just recently cleared 100% of LIMB ONSET ALS- due to fasciculations at random all over my body at different times and places and NONE In one spot that stays. My emg was clean- Nothing was found- 1 fasic which showed as normal no other potentials etc.

Now I am freaking out over BULBAR ISSUES. MY neuro won't even entertain it as I show no signs of it and I've been dealing w/ this widespread crap for almost 6 months now- not to mention when it happened 20 something months ago and went way.

Anyhow they did NOT test the bulbar muscles via EMG because I had fasciculations ALL OVER at the time of EMG and 2 clinicals so they said it didnt matter- if I was fasciculating from ALS it would SHOW EMG changes at this juncture.

My question is. BULBAR PALS, did you have random widespread fascics?
thump here or there or was it localized to face. MY neuro and my psych are about done with me. They say I am really killing myself w/ anxiety. I had 10 muscles tested. I have the EMG report right here.

I dont even know if I want the answer to the question I asked but I Was told IT DOESNT PRESENT with LIMB FASICS , HOWEVER it can spread to that but by then it will show on EMG.
HELP ME, I feel like ending my life- but beautifully I have baby inside of me due in a few days.

DeeDee (my neuro DOES have ALS patients and BULBAR patients)
 
Hi ...sorry you're having such a stressful time.

All I can share is my own experience. 27 months into bulbar ALS I still don't have fasciculations except on the surface of my tongue (which I can't feel at all). Tongue is also showing atrophy.

I have a very small twitch on my left bicep occasionally ... a few times a week, always at night ... but that's it. Also get an occasional cramp in right and/or left foot. Once I got a cramp in both at the same time.

My bulbar symptoms started with blurred vision and slurred speech when I awoke from heart surgery. Six months later, I developed chewing problems from a constantly dry mouth, then a few months after that, saliva returned to normal, the chewing cleared up but I developed trouble swallowing liquids.

Swallowing is still hard, but not impossible ... I just have to be real careful with liquids. My speech is now almost unintelligible, the left side of my face is stiff ... can't smile ... and my mouth droops badly to the right ... but I still don't have any twitches/fasics beside my tongue and one spot on my arm. None on my face.

My EMG showed denervation in three areas, including tongue, left trapezious (sp?) muscle and somewhere else I can't remember. I think I have some weakness in my left hand and numbness in my left arm, but it's so subtle I can't be sure, so I'm ignoring it for now.

Don't know if this helps ... but I would trust the neuro if he/she has given you a clean bill of health. Sounds like you have a wonderful event coming up in your life ... a new baby! ... so I hope you are able to fully enjoy this miracle you've created!
Beth
 
Hi, I'm so sorry to read that the doctors were not able to put your mind at ease. Its really really good news that the emgs were normal. And WONDERFUL news that a baby is due so soon! You have so much to look forward to!

About the bulbar, I guess the best way to describe it, is if it is bulbar onset, its just that, it starts there (with the cranial nerves) and then may or may not affect further parts of the body. The cranial nerves are in the "bulb" part of the brain stem . 7-12 are usually the ones affected (excluding # VIII). I do have bulbar palsy, and am expecting the diagnosis to change to bulbar onset of als, as my hands are now vibrating ~ mostly the right one ~ and I have some weakness of the right arm.

No, I never have had widespread twitching of the body. I did have a time when I was having some severe and I do mean powerful charley horses at night in my legs, but this was many months before I got sick, and I think it was tied to my occupation. I'm a flight attendant, and was having the leg cramps after long overseas flights.

Even though I have the bulbar, other than one consistent twitch in my jaw, and occasional vibrating,buzzing feeling in my lips, most of it is manifested by weakness and atrophy. Its the difficulty in doing what I took for granted, like chewing and swallowing a bagel, rather than being twitchy. Its my voice being weak, my tongue not wanting to cooperate forming words. Sometimes I do feel the fasciculations in my tongue, most of the time not, although one can see them. My cheeks are achy often times, like I've been laughing a lot, and there is one specific area of my jaw/cheek, at the tmj juncture, (which I mentioned earlier in this post) where sometimes one can see something moving back and forth under the skin, and I can distinctly feel it too, but its always in the same spot, rarely, I feel the same thing on the left, but its not like my face is randomly twitchy. It is the same muscle groups. And, now that my hand is starting, its just the hand I feel "buzzing", sometimes I'll be surprised, thinking whatever it is resting on is vibrating, and then I realize its just me. Other times its more of a twitch and it can be seen, mostly I just feel it. The point is that the fascis stay there though, not in my hand one day, and my calf or thigh the next. I hardly ever even feel it in my forearm, it stays localized.

It has to be terrible for you to fear you may be facing this, even though you've received clean emgs. Do you think there is something that if you learned it, it would put your mind at ease? I don't know (one way or the other) if random muscle fasciculations are ever a precursor to MND. You may not ever get any answers as to why you had the problems you were having, but you've got so much coming up in your life to look forward to, and what will be will be. We can't know the future, we've only the present, the time we live in. Maybe, with having to face such uncertainty, it will help you see the time you have with your new little one as being precious, and if that is a result of the trials you've had, and the fears that haunt you, then good has come of this, other than just your health. many hugs to you! :smile:
 
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