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Sometimes I think there are 2 diseases: ALS and "thinking you have ALS"
christo wrote:Sometimes I think there are 2 diseases: ALS and "thinking you have ALS"
I agree 100% with this one. I believe "ALS fear" is a mind trap for some of us, with GAD or HA. Problem is, if you twitch and ask a neuro if you can have ALS, he will probably always say yes. And then it will take so much time for him to feel enough secured to say "no, I am 100% confident you don't have ALS" that you could easily loose your mind before it happens. This may be a new disease, caused by the easy information availability on internet.
Now, for your particular case, I don't believe you can have atrophy for 16 months, no weakness, and still being suspected to have ALS. I think that maybe you could now reconsider going to see a neuro and ask for an EMG, because if you have atrophy, and even more if this atrophy is progressing, then there is something causing it. This is probably not linked to your BFS symptoms, but you should try to find out what is causing your hand atrophy and cure it. I understand this is really scary for you, and I understand that having an EMG could scare you more than you are actually, and probably for nothing. But come on, if someone else here had a hand atrophy for 16 months without weakness, what would you think ? Would you really believe he or she had ALS ?
Also I agree too much EMG will do more harm than good, but we are anxious people, and maybe some of us need this extra reassurance...
On the third note, if it happens I do have ALS, and I can still function.... I rather leave it till I will start dropping things down.
I almost took one, but since I've read a few months ago what happen to Tobes, I decided not to.
christo wrote:Jerry, my neuro also told me there is no 100%. He also said he didn't believe I have ALS, but he won't write on paper that he is 100% sure I don't have ALS. We need to accept this, and it's hard, believe me I know it.On the third note, if it happens I do have ALS, and I can still function.... I rather leave it till I will start dropping things down.
I perfectly understand this point, I am thinking the same way as you. The fact is you don't have ALSI almost took one, but since I've read a few months ago what happen to Tobes, I decided not to.
I really, really understand this, and I believe your are 100% right to think like this. I believe that whatever is causing your hand atrophy, it's a really slow progressing thing. Maybe a pinch nerve somewhere. Just saying that if you start having more trouble with this hand or arm, don't think ALS and go see a neuro. Don't ask him if you have ALS and he won't search for ALS. Remember, ALS is an exclusion diagnostic, if you go to a neuro for an atrophy in the hand he will search for anything before ALS (and probably before even thinking ALS, since you don't really fit the picture)
christo wrote:I really, really understand this, and I believe your are 100% right to think like this. I believe that whatever is causing your hand atrophy, it's a really slow progressing thing. Maybe a pinch nerve somewhere. Just saying that if you start having more trouble with this hand or arm, don't think ALS and go see a neuro. Don't ask him if you have ALS and he won't search for ALS. Remember, ALS is an exclusion diagnostic, if you go to a neuro for an atrophy in the hand he will search for anything before ALS (and probably before even thinking ALS, since you don't really fit the picture)
he won't write on paper that he is 100% sure I don't have ALS.
jerry2 wrote:Yes, and here was my SECOND mistake. Instead of going to a neuro and telling my symtpms and ask what he thinks about them, I was so TERRIFIED and so CERTAIN I have ALS that I came into the office and said to him: "I think I have ALS".
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