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  1. F

    I was misdiagnosed!

    for some weird reason my disease was plateauing... well guess what I almost got better overnight so I went back to doctors got new exams and stuff and now they are saying I have CIDP which actaully caused my wrists hands and feet to atrophy and my muscles to shrink, but I am getting some strengh...
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    how to delete a post and deactivate an account?

    Hi I can't find how to delte a topic i had started;or even just one message, is there a way to do it? because in that post its easy to find who i am and i got some nasty messages from the internet... thanks for your help. Also how do we deactivate our accounts in here? not that I want to do it...
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    Need your help on talking and breathing

    Hi everyone Up until few weeks ago, my breathing was ok, but now i think my abdominal muscles are so week that i can only breath when I am laying flat. I have also noticed to my big despair that I am very short of breath when I start talking and even worse when i start laughing... Now, what...
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    Is this part of ALS? Pleaaase read!

    I have read many times that sensitive issues such as paresthesia are not part of ALS However, I've experienced a lot of burning pain as well as cold ice pain in my body, mostly in my back and legs (ut also in my sclap) which sound like nerves misfiring, do you get those too? S\In the beginning i...
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    fasciculations

    Hi everyone I have noticed my fasciuations have lessened a lot lately, thogh I am more and more weak and can't walk anymore, anybody noticed that too, am i the only one? is that normal? Thanks a lot.
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    do you have these feelings or symptoms too?

    Hi everyone Since I have been sick I have been dealing on and off with some unbearable "bone pain", at least it feels so, I guess it's muscle pain but really painful... and I don't see many people here complaining about that... Am I the only one? Although I must say I have it less and less, it...
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    does muscle biopsy reveal ALS?

    Just out of curiosity, those of you who have undergone a muscle biopsy, did it show anything that was indicative of ALS? If so, why don't doctors use this method for diagnosis knwoing that many of use go a long way before they get the proper diagnosis? Thanks everyone.
  8. F

    My last video on youtube

    Hi everyone I am totally bedbound now, so i tried to keep myself busy and edited some footage I had shot few years ago while I was preparing a short film... Anyway, I'm happy I have done it:-) Poker Drums - YouTube enjoy! We're still alive...
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    Conversations with God

    Before I got sick, I used to pray everyday, I was a firm believer in God no matter what! I used to talk to him every day, laugh with him, anyway... Since I got sick, I said oh ok, this is my test in life, but seriously I find it very very unfair, to teh point where I started questionning: God...
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    gaining weight

    Hi all! to my surprise, I've gained 5 pounds in two months, now I guess it's normal as I keep reading that we should not loose weight and spend my time eating as much as I can , and certainely do even more than necessary. But at the same time, I'm thinking hell, as long as I am able to swallow...
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