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Happy Thanksgiving to you. too, AL. I know you already had your Thanksgiving up there but I'm looking forward to pumpkin pie today!

As for the disclaimer under our names, I think it is a good idea. I just can't figure out what to put under mine, except that it must not be ALS since it is moving so slow.

I remember Liz saying that one year she was making holiday cookies and the next year she could barely manage the hand mixer. That was 3 thanksgivings ago, and mixing up a batch of cookies has just now started to be a problem for me. And I can still do it- just toward the end the mixer overpowers my arm muscles. So it must not be ALS, is what I would put under my signature!
 
I wonder if some people with BFS symptoms think that when we mention anxiety or say the word "benign," what we're really saying is, "It's all in your head ... your symptoms aren't "real"?

That is SO not true!

From what little I know from reading posts here, the symptoms of BFS are actually worse and much more alarming than the early stages of ALS.

What "benign" means is simply that these symptoms are not going to kill you. Just as you can develop tumors that are not cancer, but they're real tumors, and need to be dealt with! I can't picture anyone saying to an oncologist who has just told you your tumor was benign, "I don't believe you. I'm SURE I've got cancer. I'm going to talk to other cancer patients and see if they agree with me, because if it's not cancer, what is it?" (The answer is: a benign tumor. Stuff happens to the body.)

So ... Benign Fasciculation Syndrome is a "real" disease, and recognized as such by the medical profession. BFS has wide-ranging symptoms that are probably much more debilitating than the early stages of ALS.

If a neurologist tells you you don't have ALS, he/she is not saying that your symptoms are imaginary, or that your symptoms are not "serious," just that your symptoms are not ALS, they are something else. If you want the symptoms to stop, you need to stop fixating on what it's NOT, and help your neuro figure out what it is.

Now it's time to go pick up our pre-cooked thanksgiving feast with all the trimmings, which neither my husband nor I will be able to eat ! Actually, I'll polish off the dressing. This is why cats love Thanksgiving! yum-yum turkey in their bowls.
 
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The post about "why dont you have ALS part 1 " it talks about ALS twitching and says that ALS does not have thumping or jolting twitching that you can see through your cloths. Is this true? Just wondering because my twitching has become that I can see them even through my cloths. I also have the everywhere but they will be worse in any given spot for a few hours. Legs, arms, feet, hands, face, tongue, eye, back, neck, stomach. Anywhere I have muscle I have twitching and some of them are very visable.
CB in Ohio
 
I used to be able to see my thigh muscles twitch through my clothes but don't anymore. Mostly it's just the larger muscles you'll notice. They'll be like ripples, not thumps or jolts I'd say.

AL.
 
you used to be able to see the twitching in my upper arms even with a thick jumper on.
i never panicked about the fassics as i did not know the real meaning of them.
i would just watch them like it was funny in a wierd kind of way,no i,m not sadistic:twisted:

april,sweetie.
you are not a moaner but someone with real concerns.
i did come accross some info the other day about women developing neuro symptoms during pregnancy,i am sure it was when i was looking up mitochondrial deseases.
i will see if i can find it for you, but i thought of you when i read it.
 
Beth, that is a beautifully worded post on BFS. I agree with all you stated, 100%

Al, yes, probably most people skim right past the sticky's and FAQ's. Don't know why. But I do know that if it frustrates me, and I'm fairly new to this forum, I can only imagine the extent that it frustrates the hell out of you!

CB, I just wish you could get some answers. I don't think the type of fasciculations you're having is going to be an indication of what it is though. I so hope that your next neuro visit will give you some answers, or at least a direction to look for them.

April, and Robert, you as well, especially with the ages your kids are, I know how hard this must be!

Cindy, maybe your signature could have something about being the person behind that future disease/syndrome/condition that is sure to be named after you one of these days!

Happy Thanksgiving everyone. I haven't been reading on the forum today, so I don't know if there is another thread about this, but I wanted to say that I, on this Day of Thanks, am so happy that my son is here, in the states, and not over in the middle east. This is his first Thanksgiving not in a war zone since 2004. :)
 
Benign Fasciculation Syndrome

Well done, Beth! I love the way you put that in writing. I wish the neuro at my last appointment would have told me I had BFS. I'm just simply surmising for now.

When you said the symptoms of BFS were worse than initial symptoms of ALS, well, if BFS is what I've got, you are right! The spasticity is terrible, just as bad if not worse than the twitching (and I am the self-proclaimed Twitching King - non-ALS).

Z
 
The last time I saw my local neuro (the one who thought I had ALS) he said, "I am more and more hopeful that this is benign."

I replied, "You mean BFS syndrome?" and he said "No. I mean whatever you have is probably not going to kill you."

So you are right, Beth. You described it perfectly.
 
Olly

Thank you soo much for your thoughts of me, it means alot to me.

Rose,

You too!

YOU all mean so much to me and the support that I get here is AMAZING!
It is hard to talk to family (i dont do that much) or friends ( I never tell them anything but autoimmun-something).

It is nice to have a place of caring and informed people to turn to. I often find myself thinking of you all during my day or my prayers!

Thank you to all!

April
 
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