More symptoms, Getting more worried

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More symptoms, Getting more worried

Postby twitchchick on October 12th, 2002, 9:20 am

My fascics started 7 years ago. All over the body. 2 years ago I noticed a significant weakness in my left arm. Sometimes it is hard to do meticulous things with my fingers. But I am still able to sit here and type quite briskly with that hand and have not lost use of it in any way. It just feels very weak. Over the past week, I am getting a pins and needles feeling on the left side of my face, in my left leg and in the upper left part of my back. I had seen my 3rd neuro just about a month ago and had a negative EMG (the first one I had 7 years ago). I had many many other tests, just like everyone else. I had an MRI about 18 months ago of the brain, cerv spine and thorasic spine. All were normal. I have severe ringing in my ears and developed horrible pain in both ears. I'm worried about ALS and MS. Does anyone have the significant weakness with their BFS? This is really concerning me.
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Postby twitcher(nli) on October 12th, 2002, 10:32 am

7 years??? Most people with ALS would not be living after 4-5. Again, if you had a clean EMG after 7 years of twitching, it is IMPOSSIBLE for you to have ALS. The twitching caused by ALS is due to the muscle dying!!! This is easily picked up on the EMG. 7 years of muscle death would definitely leave you, at the very least, immobile. Ear ringing, tinnitus, can be caused by a ton of things...including damage to the ears from loud music. (I was in a band for years...my ears ring constantly) It is not caused my ALS.
Glad to hear about the clean MRI. That is very reassuring that you don't have MS or a tumor causing the problems. What did your neuro say about the weakness? Was he able to detect it on exam? (if not, you're not weak)
Remember, feeling weak is not the same as being weak. I think all of us have gone through the perceived weakness ordeal. Keep working with your docs to rule out anything major and then, try to accept the fact that maybe there is nothing terribly wrong with you.
Good luck...I'll bet money that you are fine.
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Postby tlotoxl on October 12th, 2002, 10:44 am

i get ringing in my ears too. i think it's partly because i write music on my computer/synth setup using headphones and also partly because i had an ear infection a few years ago that was pretty bad. still, it only really hit me recently, long after the ear infection and when i wasn't writing any music, so it had me freaked out at first.
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Postby Jen on October 12th, 2002, 9:54 pm

Twitchchick, is it possible that you are experiencing fatigue? I've gotten that a lot with BFS, and at times thought that I was becoming weaker in one or two limbs. That was all temporary, though, and it still comes and goes. I have also had the pins and needles tingling. I've managed to overcome the fatigue by increasing the amount of exercise that I do. It was a bit of a viscious cycle at first. I seem to suffer from exercise intolerance, which is normal with BFS. I also get the ringing in the ears, but assumed that it was a side effect to one of my medications. I would have your doctor check your ears, though, since you are having ear pain. Ear pain could indicate an ear or sinus infection. With clean tests, though, I think that what you are experiencing is normal with BFS. Good luck :)
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Intersistial Cystitis

Postby twitchchick on October 13th, 2002, 11:48 am

I also failed to mention that I was diagnosed with intersistial cystitis about 1 month ago. It's an extremely painful bladder disorder. I'm on medication for the next 3 month, maybe even longer. There is no cure for it and they do not know exactly why people get it. This is sometimes seen in MS. This worries me.
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Postby Jen on October 13th, 2002, 9:34 pm

Twitchchick, that sounds very painful. Another BFS'er mentioned the possibility of intersistial cystitis. You can find her message under Symptom Management, and the topic is "bladder problem". Hang in there.
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Postby Nole on October 15th, 2002, 12:27 pm

I have ear ringing at times also, actually it is funny you are all mentioning it because it has been happening recently. I think it is tinnitus (mild case in my case) I get it when my ears have fluid in them alot. I had MANY ear infections as a child and adult which I think may cause this. Listening to music to loud will do it also. Mine comes and goes. Nothing to worry about I dont think???
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Postby Jen on October 15th, 2002, 10:02 pm

I have a lot water-in-the-ear problems, and have had a lot of ear infections both as a child and an adult. I think the tinnitus is a bit like the twitching in that I usually (but not always) notice it only when I'm thinking about it. I looked it up once (long ago), and tinnitus is usually an annoying condition brought on by ear infections, certain meds, and loud noises, and it usually goes away on it's own. I discovered ear-putty this week. It can be purchased at the drug store and I've been using it when I swim and shower. It helps.
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Postby Brian_B on October 15th, 2002, 10:25 pm

if you have problem with ear infections, get personlized molded ear plugs...I had tubes as a kid and got infections a lot so I have molded ear plugs now to wear swimming or in shower and I havent had an infection in a long time.
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