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Re: Timeframe ?

PostPosted: April 20th, 2009, 11:28 pm
by simon_w
Just to confirm that you can definitely pick up LMN signs when you examine a patient - I nay bot be a beuroilogist but I do quite a lot of neurological examinations on my patients. Cheers

Re: Timeframe ?

PostPosted: April 21st, 2009, 12:42 pm
by TJM24
Okay maybe I shouldn't have read this thread since its raised some worries with me. I had a clean EMG and neuro exam about 5 weeks ago following a month of widespread twitching and bad leg cramping. The emg covered my left leg, and arm and shoulder and he also needled my spine and my tongue. The twitching died down for a few weeks but has since come back on a bit, especially at night or after exercise. The thing that has me worried is that my right hand has continued to have this fatigue in the hand and forearm which comes and goes and a single spasm/twitch in the hand that pulls my middle finger and actually makes it tremble during a spasm of the hand muscle. I also feel like I can't leaf through paper pages with the right thumb and forefinger (the pages get stuck) but I can do it fine with the left hand and the I'm RIGHT HANDED! So this has be worried that there is a strength deficit in my dominant hand? He didn't emg the right arm or hand. I'm getting a bit concerned that 1) he didn't emg this particular limb (and although it wasn't an original spot for the twitching and cramping its become a hot spot in recent weeks and 2) could the emg have been too soon (4 weeks after start of widespread twitching? Can [email protected] start with some widespread twitching and then settle into a distal limb?

I don't want to go down the path of running back to the neuro (although he did mention coming back in about 8 weeks if the twitching hadn't improved or subsided in order to check for other (non-MND) things.

Re: Timeframe ?

PostPosted: April 21st, 2009, 2:15 pm
by Blizna
Simon: probably we misunderstood each other. Of course you can see results of LMN involvement (atrophy, weakness and of course twitching) but you cannost objectivize it and clinically confirm its LMN involvement, unless you have oscilloscope built-in in your fingers :)

TJM24: This study which worries you mentioned that those have localized twitching, not widespread. AFAIK there is no described case of widespread twitching that develops to ALS, and believe me I went through the most specialized literature in that field. EMG cannot be done too soon once fasciculations developed, the reason why some had clean EMG and later ALS was due to UMN beginning, which EMG cannot pick up of course. Altough nothing is for 100%, do not waste your life with worrying.

Re: Timeframe ?

PostPosted: April 21st, 2009, 7:41 pm
by Capital H
6.7% of the very small percentage of the population who get diagnosed at all is a very very small percentage, a very slight chance indeed.

I don't know how many twitchers there are on this board, but I am willing to bet that altogether we number more than that small percentage of a small percentage, so let's face it, twitching is not a primary symptom of ALS.

Re: Timeframe ?

PostPosted: April 21st, 2009, 7:58 pm
by TJM24
Blizna wrote:TJM24: EMG cannot be done too soon once fasciculations developed, the reason why some had clean EMG and later ALS was due to UMN beginning, which EMG cannot pick up of course. Altough nothing is for 100%, do not waste your life with worrying.

My bigger worry is that they didnt emg the right arm/hand where I now seem to be having fatigue and spasming. My problems didn't start in the hand they started all over and were mainly in the left calf so they focused the emg on the left side. I guess my question would be could MND start with all over twitching and cramping in the lower legs, but you test negative on emg on those parts yet have it settle/actually start in another spot (like the right arm) where no emg was done.

Re: Timeframe ?

PostPosted: April 21st, 2009, 8:26 pm
by Capital H
I think the rule is that if you have ALS it does not matter where you do the EMG since it is systemic, it will show up even before you can see anything.

So for that 6.7% I would guess if they had and EMG it would have been a bad one confirming it, whereas for us a good emg rules it out.

Re: Timeframe ?

PostPosted: April 21st, 2009, 11:22 pm
by jro
My neuro with 40 years of treating ALS patients says he has never seen a case that began with bodywide twitching. He wouldn't give me a time line for ruling it out even though I asked.

Re: Timeframe ?

PostPosted: May 8th, 2009, 2:37 am
by LaurentCH
read a homepage from a pals. he described he had twitching in the shoulder of one side first. a month later he twitched in the shoulder and arm of the other side and another month later it began in the thighs/stomach/back. it was after 4 months only that he began to fall down while walking (didn't have an emg until then) and felt paralysis in his leg. is he the exception of a widespread als-twitcher without weakness?

Re: Timeframe ?

PostPosted: May 8th, 2009, 4:51 am
by lostboy
Blizna wrote: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.

Sorry but does this mean you can only be certain after 2 years??? :( :(

Re: Timeframe ?

PostPosted: May 8th, 2009, 5:42 am
by LaurentCH
good question lostboy, anyone knows???? sounds like we are still not on the safe side...!!!???;-(

Re: Timeframe ?

PostPosted: May 8th, 2009, 11:10 am
by Blizna
That just means, that in this Mayo study which everyone here still refers, doctors selected only twitcher who twitch longer than 2 years - thats time they considered as safe, it was just their choice. Funny its not mentioned here - that is just half-information which is disturbing me on this site.

Laurent, especially you, you will be never in the safe side as Im reading your posts - you dont want to stop, you dont want to quit this stuff for some time. Many people did that and returned after year, many told it to you and you are still not listening. You are in 7th month, *beep*, you act like newbie who just discovered what is ALS.
Im pretty sure all your symptoms (tingling etc.) are from anxiety. You are pretty wrong if you think that if you dont feel anxiety, its gone. Read your last posts - are you still saying there is no anxiety?
I had tingling, I had electric shocks like feelings, swallowing problems in times of cruel anxiety - all is gone now, once you threat anxiety,no matter if you feel it or its underlying. You probably know, that symptoms caused by stress/anxiety persist much longer than those factors.
Dont take it offensive, Im just trying another way how to tell you that this stressing and obsession will kill you more likely than ALS that is 7 months hidden from everyone.
For short time, take some benzo and antidepressants until your serotonine increases and your panic attacks disappear.

Re: Timeframe ?

PostPosted: May 8th, 2009, 12:05 pm
by MarioMangler
is he the exception of a widespread als-twitcher without weakness?

I'm pretty sure that falling down while walking would count as weakness. To me, that seems to be the important variable in that anecdote...

Re: Timeframe ?

PostPosted: May 8th, 2009, 12:21 pm
by LaurentCH
yes but only after 4 months

Re: Timeframe ?

PostPosted: May 8th, 2009, 12:24 pm
by MarioMangler
Yeah but still that's a pretty fast downhill regression. From twitching to falling down in four months? That's not remotely like anything anyone has ever had here. I'm just pointing out to the newbies that "falling down" is the key part of the story there.

Re: Timeframe ?

PostPosted: May 8th, 2009, 1:00 pm
by basso
The definitive information for bfs is this site. Not the Mayo study, not Hey Yoh study, not the Down By the Bay study.

The time-frame is: there is no time-frame. You all have bfs. It's common, it is benign, you can still smoke your doobies and you can still boink your brains out. You won the lottery. Instead of something nasty you got something a little irritating. It is bfs after five minutes, it is bfs after five years. You are debating your fear, not facts.

Fear: Omg, I fell down.

Fact: Your drunk.

Fear: Oh, yeah...quite a party, eh?

Fact: I've seen better. Hey, have you got any eXstacy left?

Fear: It's cool down here, but I think I pi-ssed myself.

Fact: I thought you were hardcore. "Party all night," you said. Should've asked Anxiety to come...that chick can rock. Skip the eXstacy, I'm going to shoot myself.

Fear: Wtf? No!

Fact: Look who's standing?

Fear: heh heh, want to share a fatty?

Fact: Roll away bro.