Page 3 of 5

Re: Timeframe ?

PostPosted: April 16th, 2009, 1:50 am
by fox2run
Fair enough.

Re: Timeframe ?

PostPosted: April 16th, 2009, 3:51 am
by Bomp
I just remembered something. One of the conclusions of the Mayo clinic study was that people with BFS have no greater chance of developing ALS than the population as a whole.

Re: Timeframe ?

PostPosted: April 16th, 2009, 5:14 am
by fox2run
Our problem is not the statistics, but the uncertaincy: Are my twitches benign or not? How long do I have to wait before I can rest assure? (look at the headline of this topic), do I need many tests? Can I thrust the neuro? Do I need an EMG? Do I need several? Am I the "not-possible" case? etc.

Re: Timeframe ?

PostPosted: April 16th, 2009, 6:40 am
by Bomp
Well, there is good new and ther is bad news.

The good news is that it is highly improbable that you suffer from ALS. So improbable in fact that it is perfectly reasonable to just flat out conclude that you don't have it. Since twitchers are just as likely or unlikely to develop ALS as non twitchers you have no more reason to fear the disease than the person next to you.

The bad news is you can never be certain. The same way you can never be certain that you don't have a silent tumor in your guts or a brain aneurism waiting to happen. You cannot know for sure that that headache you woke up with isn't a symptom of brain cancer or that your bout with depression isn't a symptom of Parkinson's disease.

The refusal to accept any kind of uncertainty is a symptom of health anxiety and something that should be challenged actively. I have written about reassurance addiction before and I won't go into it here. My advice though – deal with this now that you are young, because it's unlikely that you will have fewer potentially sinister symptoms as you grow older.

Re: Timeframe ?

PostPosted: April 16th, 2009, 8:10 am
by fox2run
Well tnx for your reassurance and the permanently lack of same. :lol:

Your right. Time to thrust GP and neuro. Looks like something else is gonna end my life. Who knows what... a car-accident, brain-tumor, cancer in a thousands ways, or perhaps something more spectacular: a nuclear device, airplane crash, falling down a tree with an elephant on top, or drown in a big bowl full of beer. :wink:

Re: Timeframe ?

PostPosted: April 16th, 2009, 8:15 am
by Blizna
Hmm about Mayo study there is a misinformation on this site - the subjects had to have twitching for 2 years at least ,so if somebody developed ALS after 23 months, we wouldnt know it from this study. The timeframe was given by Mayo researchers - thats the dark side of this study. I still say, there should be all information, not just half..

So about Mayo study: None of followed subjects with twitching at least 2 years developed ALS in next 16 (and in few cases even 32) years.

Anyway, nobody from this site got ALS and most respected neurologists say the same: clean EMG, clean clinical means no ALS at this time.

Re: Timeframe ?

PostPosted: April 16th, 2009, 8:28 am
by Bomp
I am certainly not going to be thrusting any GP:s or neuros as I'm sure they may risk being fired if they fornicate with their patients. :lol:

Re: Timeframe ?

PostPosted: April 17th, 2009, 2:32 am
by fox2run
Blizna wrote:Anyway, nobody from this site got ALS and most respected neurologists say the same: clean EMG, clean clinical means no ALS at this time.


And what about a clean clinical but no emg? It seems that a lot of us have been to neuros who didnt find one needed. :?:

Re: Timeframe ?

PostPosted: April 17th, 2009, 5:16 am
by Blizna
Clean clinical means there is no UMN involvement, but for LMN changes EMG is needed. Since ALS can begin with UMN or LMN, for your certainty and anxiety is better to have them done EMG. Its incredibly rare to have fasciculations due to ALS and clean EMG, so clean EMG after onset of twitching is pretty reassuring.
I personally underwent 2 EMGs and I cannot describe the happy feeling after the second - my symptoms gotten much worse before that EMG (2 months hotspot in feet, tiredness...). But it was perfectly clean even in those hotspot feet muscle...
It really worths it, I dont think the pain is something that need to be considered..nothing in comparation with stress caused of uncertainty.

Re: Timeframe ?

PostPosted: April 20th, 2009, 5:03 am
by simon_w
A medical examination should pick up LMN as well as UMN problems, by the way. But the advice about an EMG to give further reassurance is good advice.
All the best
Simon

Re: Timeframe ?

PostPosted: April 20th, 2009, 6:48 am
by Blizna
Simon, medical examination cannot pick up LMN, thats why EMG is needed. You can see fasciculations or "test" weakness, but if it comes from LMN could prove only EMG.
Clinical is for UMN, EMG is for LMN. Simple :)

Re: Timeframe ?

PostPosted: April 20th, 2009, 6:57 am
by fox2run
And what about time? Any idea how long it takes to be relatively sure that the facics are nothing sisnister? (headline of this topic).

Re: Timeframe ?

PostPosted: April 20th, 2009, 7:18 am
by Blizna
Thats the most discussed topic and the most mysterious one.

The majority of "twitching first" are weeks, rarely months. Eisen & Stewart in the book ALS:Synthesis of reserach, describe this as quite often (weeks).

The same authors published the study where maximal timespan was 11 months.

Above one year its extremely rare and unlikely.

Re: Timeframe ?

PostPosted: April 20th, 2009, 9:38 am
by fox2run
Ok. Thanks. In that case Ill forget about further tests and worries. You saved my day, Blizna. (Being 22 months out and still walking and running on twitching feets). Good luck to all of you. I hope I have the mental strengt to stay away from this site (never visited others - only once - you know what kind of...) for a while in order to enjoy the fantastic weather and do some sailing in our new boat with the kids. Ill keep you posted from time to time. But now I need to put other things into my head than worries.. C ya all and thanks for the support and for this site. It has been a live-saver for me. It is now time to get back in shape and play some fooooballlll..... :D

Re: Timeframe ?

PostPosted: April 20th, 2009, 11:31 am
by Blizna
Glad I could help! Hey, Im in for 22 months, too :) Still have better and worse days, though, but not much ALS fears actually :)