Fasciculations

BNR1 · 10-14-2009, 12:15 PM

My fiancee was Dx with ALS in early 2009, his presented as right/foot drop and the ALS MD has stated his ALS appears to be slow in progression. He is beginning to drag his left leg now and has expierienced fasciculations in both arms since Dx. Last week I noticed little to no twitching in his arms and mentioned this to him... he said "I know... I've noticed that too... I don't know if that is a good thing or a bad thing" so... is that a good thing or a bad thing?

BethU · 10-14-2009, 01:55 PM

BNR1 ... So sorry about your fiance's dx. I'm glad, however, that it is a slow progression.

I really don't know the answer to your question, but wanted to show that it's being read. Usually, fasciculations don't have much to do with ALS. The real symptoms are in muscle weaknesses, and. so far as I know, fasics are not a good predictor of anything. Others may disagree.

Welcome to the forum, by the way. Glad you found us.

joelc · 10-14-2009, 02:02 PM

Beth is right. I agree with what she said.

The one thing to keep in mind is you will likely have fasics if you have ALS, but a lot of people have fasics that don't have ALS and will never have it. So they really don't mean a thing and should never be used to predict ALS.

Erica · 10-14-2009, 02:35 PM

I heard that in ALS fascics are mapping out further denervation, but at same time I also know that some ALS pts have wide psread fascics even before the diagnosis.I wonder myself if fascics could be a predictors of progression.

Al · 10-14-2009, 03:59 PM

Most of us know that fasic's can be caused by stress. Throw in an ALS diagnosis and the stress level rises. The fasics could be a result of the dx and not related to progression. My own opinion is that as long as it's got fasiculations, then it's live. Which is a good thing.

AL.

sandradenise · 10-14-2009, 04:13 PM

Al , so what you are saying is as long as they fascic the nerves are still alive. But when it stops they are dead. I am new at this and learner .

Zaphoon · 10-14-2009, 04:16 PM

I agree with fascics not being a good indicator of any one thing. There are simply too many things that can cause them. I have them non-stop in my legs and I do not have ALS, only PLS (and that is still questionable in my mind).

Some PALS report that they've not experienced fasciculations but there are many out there that get them that don't come close to having ALS.

Zaphoon

joelc · 10-14-2009, 04:49 PM

Sandra, if you have fasics then the muscle still has life in it.

I don't get them anymore, but I don't move much either. So my muscles are gone so there is nothing to fasciculate. I would love to still have fasciculations.

In the last few months I have lost what mobility I had. I can no longer help when transferring, we use the lift for everything. I can't even feed myself at all anymore.

But I DON'T HAVE ANY FASCICULATIONS! LOL

Erica · 10-14-2009, 06:31 PM

joel, did you have widespread fascics or only limited to a certain body region?

joelc · 10-14-2009, 07:22 PM

They were primarily in my legs but happened all over.
My wife and I used to enjoy watching them, now we have to rely on TV for entertainment.

sandradenise · 10-14-2009, 09:23 PM

Thank you Joel again. They are rather funny to watch, annoying most of the time but weird.

summer09 · 10-14-2009, 10:24 PM

I'm new to this forum but have come to visit daily to read on people different varies of this disease....To make a long story short, i'm a 25 year old female in general good health. this past year i have developed widespread facilitations that come and go on a daily basis. Mainly now they are located in my feet..i feel them on top and on the bottom. i have random twitches everywhere from head to toe. i do not have muscle weakness that i have noticed. i do get muscle cramps in my calves. My feet and hands have recently started to cramp also. this comes and goes along with my joint pain. my weight is generally 114 and recently in the past few months gone down to the lowest of 106. Current is 109. im working on maintaining and gaining this weight back. The twitching is very scary. along with the pains/cramps. the back of my legs feel right upon standing but eventually get better with movement or rest. does this consist of als to any of you? i have no ins but do have a dr apt in a couple weeks. im looking for just some information..considering i have been very very scared of this disease. for it is not as rare as some people may believe to think. i do not think i am invisible and i am aware of other things this may be. als is my first concerm. i may note i have had mri's of my head due to other things, all of which have come back clean. i have had complete blood counts done, all of that has also came out "perfect" .. i really don't know where else to look. any insite would be helpful..thank you for reading

Al · 10-14-2009, 10:36 PM

Sandra. Some fascics will stop on their own. The muscle might not be dead or the motor neurons but whatever was stressing you or the muscle could be gone.

AL.

holdingouthope · 10-15-2009, 01:38 AM

Quote:

Originally Posted by summer09

I'm new to this forum but have come to visit daily to read on people different varies of this disease....To make a long story short, i'm a 25 year old female in general good health. this past year i have developed widespread facilitations that come and go on a daily basis. Mainly now they are located in my feet..i feel them on top and on the bottom. i have random twitches everywhere from head to toe. i do not have muscle weakness that i have noticed. i do get muscle cramps in my calves. My feet and hands have recently started to cramp also. this comes and goes along with my joint pain. my weight is generally 114 and recently in the past few months gone down to the lowest of 106. Current is 109. im working on maintaining and gaining this weight back. The twitching is very scary. along with the pains/cramps. the back of my legs feel right upon standing but eventually get better with movement or rest. does this consist of als to any of you? i have no ins but do have a dr apt in a couple weeks. im looking for just some information..considering i have been very very scared of this disease. for it is not as rare as some people may believe to think. i do not think i am invisible and i am aware of other things this may be. als is my first concerm. i may note i have had mri's of my head due to other things, all of which have come back clean. i have had complete blood counts done, all of that has also came out "perfect" .. i really don't know where else to look. any insite would be helpful..thank you for reading

by no means an expert as we just got on the ALS train recently, however, all the research I have done says things get worse with movement and not better, so I would think it wouldn't be ALS based on that alone.

My guess would be stress. If you are in the medical field (just a hunch) I would think that automatically makes us hypochondriacs (former one speaking from experience) and as I'm a nurse I have to often fight the urge to think I know have whatever my patients have, even now dealing with my dad

ANYWAY, if I can give you ANY piece of advice, it would be to try not to give your symptoms more life than they deserve until you need to. And by that I mean, unless things get worse or you have a diagnosis, I would not read too deeply into it. I think it's stress and if you think "I have als, I have als" you will start to manifest those symptoms in yourself... the mind is a very powerful thing.

Danijela · 10-15-2009, 05:01 AM

My partner has fasciculations in most of his muscles. I have given up using them as a predictor of anything as so far I have seen no particular or regular pattern of fasciculation-weakness-atrophy, or weakness - atrophy- fasciculation, or weakness - fasciculation - atrophy. Dani