Exploring ALS Forum in France

[FabulousOne]

Hi there,

As some of you may know, I am french, and I have access to a french als forum. I know it's not necessarily the good thing to do, but I go there sometimes, I don't know why. Anyway, this forum is full of interesting people, full of courage and - sometimes - hope. There's a lot to learn from this new genic therapy. What will happen the day they'll find a cure for this disease ? Will our twitching disappear ? But I digress.

So here it is : yesterday I came across a fasciculations topic, and there was a guy claiming he had had fasciculations for 3 complete years, without anything else, and he had clean EMGS (!) - and then a weakness, and ka-boom : an als diagnosis.

At first, this scared the s*** out of me. Then I thought : what if this was a fake ? It's impossible to know. The guy's message is very clear, concise, humble, coherent, so I find it hard to assume it's just a pack of lies. But people are so weird, you know. I once met a girl claiming everywhere she had cancer with 6 months left to live, and this prooved to be completly false.

Now I don't know what to think. Obvioulsy, this case is in complete contradiction with the Mayo study but then, there are always exceptions, right ? Maybe I was just unlucky to come acoss this one. Seems this sort of things always happen when I'm starting to feeling better.

Oh, and there's more : I found it strange that this guy seems so optimistic. He is 28 years old now, which is so pretty young, and means his disease started when he was 24. Woah.

Any advice ?

Take care all of you.

Fabrice

 

[RipleyGates]

Cant resist. could he have had bfs, and then aquired als,totally unrelated who's not to say that some of us might end up with als somehere down the road That does not mean that it ever had anything to do with bfs. we could end up dying of some sort of cancer,is that to say it was bfs related this is one of the biggest points that I seem unable to get across.We all all going to die someday,odds are it wont be bfs related.

 

[ydav3yat3s]

One thing that seems to be a recurring issue on stories like this is that they seldom seem to contain all the relevant facts.

I don't have any way of knowing whether this is true or not. But here are some of my thoughts on it:

I live in Italy and am on the nationalized Italian health care. I would expect the French system is similar and that this person is probably on it as well. While it's not hard to get a specialized exam (EMG for example), they surely don't throw them at you unnecessarily. So, I expect it to be unlikely that this person had multiple EMGs (plural as you wrote) without a reason beyond mere twitching. What if this persons' doctor actually said his EMGs were "inconclusive" and he interpreted that as clean? Or some other medical jargon that is ambivalent but could have been taken the wrong way? I just think it's unlikely he was given more than one EMG if the first was totally clean. I think it's easier to do that in the US where medicine is profit-driven and they're often plenty happy to do that expensive procedure again and again ($800 for what amounts to a half hour of electronicly monitoried acupuncture?!?).

I asked one of my former neuros about the rare (and to this date unsubstantiated) stories of people (with BFS dx) getting ALS after a clean EMG. He said in those cases he would suspect a badly administered or misread EMG.

Those stories are rare. So--consider all the people who get BFS. It is inevitable that some are going to develop something nasty independently of their BFS. It is inevitable that some are going to get a bad doc who didn't do or read the EMG right. It is inevitable that some are going to misunderstand what their doctors say and recount it incorrectly later on some forum. Some might have an agenda and mix a little falsehood in with the facts... etc. etc. etc. There are going to be wild cards in BFS, that's life. I would think we ought only take notice when there's a pattern. Stories like that bother me too. But so far there's always been more to the story...

 

[StephG22]

You will never ever ever do yourself an ounce of good in any way looking at an als forum. You can't get past this unless you ban yourself from them. What are you looking for? You will only find reasons to fear the dreaded disease. Do yourself a favor and stick to this site only!

 

[GinniferLynne]

As my doctor, grandmother, mother, husband, friends all say, "There are no guarantees in life".

In other words, if this is true, it is very well possible that he did have benign fascics for years and by coincidence, came down with als. Of everything I've ever read anywhere, anytime, study after study, benign fascics does not lead or turn into als.

Look at it this way, I could have pains in my chest on and off for years, then one day have a major heart attack, that does NOT mean my chest pains were in any way related to heart disease. (pains could have been caused by constant muscle strain, indigestion, etc)

Keep your chin up. I KNOW it's hard.

 

[DJohnDavies]

Fab,

Even if it were a true story, it's at the very least a most uncommon presentation of ALS symptoms. Like GinniferLynne said, anything can happen. Doesn't mean it will to you, just that it could have to the French person in your story.

That being said, there's more to the story than simply twitches for three years. There always is, we just don't get teh benefit of knowing all the details. We read the words twitching and ALS and it automatically sets off that fear within us. But there's more to it than just twitching.

Johnny