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miloedison

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boca
I'm really scared that I have ALS. So much so it is consuming my life and my family. About two months ago just before going in for gallbladder surgery, I noticed twitching in both of my calves.

I met with my neuro shortly after and he performed the standard strength tests. I continued to have the twitching in my calves, so about one month later he performed an EMG/NCV and he said it was clean.

Fast forward another month and my twitching in my calves continue and it has slowly moved to other parts of my legs. It has just started in my left arm as well. For about two weeks I have also experienced cramps in both feet and a little bit in my hands.

I have a couple of questions. I feel since my neuro is not an ALS specialist he might have missed something on my EMG test, is that possible? Also, the twitching is not random, it continues in the same area as when I first noticed it but has spread slowly, does this seem like an ALS sign? The cramps do not go away no matter what I do, this seems less like BCFS and more like an early ALS sign, correct? Finally, my arm and leg size seems to be considerably smaller. I have been measuring them for about two months and my calves and biceps are definitely smaller by about an inch on my calves and biceps. Does that seem like muscle atrophy?

I’m trying to get to an ALS specialist at UM in Miami but still waiting.

Thank you for any advise.
 
As most people will tell you on this site, Twitching is not relevent with ALS, not only that but twitching usually comes AFTER weakness in the muscles, then the Twitching(From what i read and am told some people with ALS never even get them.) then the atrophy as the body breaks down.

I have twitching too but no sign of weakness, i also have muscle wasting but all of my affected limbs are fine and i have NOT lost my stamina in running and so on and so forth.

Dont worry BCFS is as it states BENIGN meaning linked to nothing. As for atrophy, I know people(Including me) that have it for no reason what so ever, my buddy is a football player, always hitting the gym, i asked him about my affected spot and he told me "Dude it happens, just eat some food and take some supplements, work out, and it will go back to normal. Also stress can cause your muscles to waste as your body thinks it has ALS. I believe this is also seen in med-students studying this kind of stuff "Text book syndrome".

If your EMG came out CLEAN then your fine. From what i have read ALS can be seen quite easily on an EMG. Dont be so caught up in ALS, and im sure as these folks here will tell you, DR. google will get you into trouble.( i know this first hand.)

Not only that but the USA has about 313 million people, only around 50k have als. that's how rare it is.

Could also be something to do with your operation. Are you taking any meds (before and after?)
 
I'm more worried now that I have the foot and hand cramps. I also have what I think would be considered spasicity every night when I go to sleep. I haven't slept well for over a month.
 
You have no signs that i can see of ALS so relax, what yyou call spascisty is not, trust me i have both.
 
Thank for your replies. I will following up with my neuro and hope for the best.
 
Relax, i have more symptoms of ALS then you do, and im 90% sure i don't have it. And Twitches are considered cramps. if you have BFCS then most people get bad cramps as well.

What is it? do you WANT to have ALS? Don't get so worked up about it, again its a RARE illness and again Twitches and cramps come AFTER weakness, if you can Drive a car(Put your foot on the gas and go) then you have no leg weakness. if you can open a jar(Peanut butter jar ect..) then you have no hand weakness, if you can lean on a wall with one hand then you have no arm weakness. if you can get out of bed without falling down or having to hold onto something you have no weakness at all.

And example of weakness(Just so you know) is, your walking and you see a rope, you attempt to step over the rope and your leg just does not go up as it normally should and you fall.

Your fine, just chill. and im sure your neuro will tell you the same.
 
I've had twitching and cramps for over 3 years and do not have any form of ALS. The key is progressive weakness. Most of my weakness I had got better with the exception of one arm/shoulder.

As has been previously stated, BFCS causes twitching and cramps and is nothing to snicker at. It is treatable and non-life threatening. I'd put my focus on something benign vice something not.

Please try believing that your condition is something benign and life will be much more enjoyable for you and those around you.
 
Would bfcs cause cramps in bottom of my feet where there is no twitching? No pain med or rub relieves the pain.
 
Well, the fact is, Cramps and Twitches can be caused by: poor circulation, lack of enough salt, dehydration, abnormal mineral or hormone levels, pinched nerves, alcohol or tobacco use, partially-obstructed flow of blood to the legs, nutritional deficiency, environmental toxicity or chemical sensitivity.

All those things listed above can be inpart to your symptoms. As i have said before CRAMPING AND TWITCHING COMES AFTER WEAKNESS THEN ATROPHY. It wall starts out with weakness in the effected limb, and als usually starts with one limb at a time. I get cramps all the time due to my flat foot, if you want to know foot pain then get flatfooted and pigeon toed.

BFCS can cause Cramps ANYWHERE in your body, since the muscles in your foot are tighter the twitches could be causing your foot to expand and stretch to much causing your pain.
 
Hello there ! I hope you're doing okay considering. I am living with ALS since dec 05 and it has been a challenge. My docters name is Richard Bedlack and he is the real deal; he does not sleep. Dr. Bedlack runs an ALS clinic in Durham, NC and they are located at 922 Moreene rd. However possible you need to go see hiim; he has been voted the best in the country by his peers. The clinic is funded by THE ALS ASSOCIATION. If you are a little short on cash they have grants to help out. Also if you served 90 consecutive days in the military you need to contact THE PARALYZED VETRANS OF AMERICA and ask for Bill Pack and he will help you. I really hope you don't have it . I will pray for you. Sincerely Dugan Smith
 
I'm only trying to help make this clearer...for me at least the weakness in hands first and then legs didn't hurt, as in no pain. They simply didn't work right.

As Tako said, pain indicates something is wrong, but a clean emg screams "NO ALS".
 
I used to get cramps in the arches of my feet when I would tie my tennis shoes too tight.
 
There are numerous things that can cause muscle cramps. See the doctor to treat them. If there was true atrophy, there would also be loss of function. Clean EMG means no LMN issues were found.

Routine labs need done to rule out things like b12deciciency, etc. ALS doesn't present with your symptoms. Good luck
 
What about the significant loss of muscle size in my arms and legs? My understanding is muscles weigh more than fat and it is pretty evident that my legs and arms have gotten considerably smaller less so in my stomach. My wife even pointed out that I lost my butt! The pain is from foot and hands is from cramps, not a general pain.

I know that a clean emg is usually a very good sign but I can't help but wonder if something was missed or it was done too early. It's not impossible to have a clean emg and have one later that iis dirty, right?
 
A very good and VERY IMPORTANT sign that points away from ALS. With significant wasting in arms, legs and butt, you would be extremely weak by now.
 
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