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Could it be anything other than ALS

Posted , 51 users are following.

sean73
sean73

Wondering if anyone has has similar issues and what it turned out to be?

started for me in March when I noticed to get muscle twitching all over my body arms, legs, feet, lips, buttocks etc. Some twitches were quite strong and would repeat 3 or 4 times rapidly then stop others were seen but not felt.

within a week one of my legs felt odd not sure how to describe it. Then the leg dealt weak but I still use it.

i went to the doctor who scheduled an EMG and NCS. The EMG was done on 2 muscles in the calf of my good leg for some reason and I was told all teats were normal. They suggested BFS. I was happy with that. 

Nothing changed, in fact I now have thigh Atrophy  - outer quad muscle. Doc confirmed the atrophy and is sending me back to the neuro. At this time I get a rush of muscle twitching in my upper abdomen after I cough or sneeze which is keeping my ALS fears on my mind. I can still walk, my leg gets tired fast and aches most of the time and the muscle has a burning feeling in it occasionally sometimes it even feels like it is vibrating. There also seems to be a tremor of my skin on the thigh, the wohle area between the knee and hip. Looks almost like the skin it shaking slightly from side to side. Not my leg shaking just the skin or muscle. I am also exhausted all the time and when I wake up I am mort tired then when I went to sleep. 

My doc admits he is confused and says he has no idea what it could be - this obviously leaves me quite frustrated and scared. I asked him about ALS and he said he doubts it but can offer no other possibilities as all my blood work and tests are fine. 

Hopefuls someone out there may be able to shed some light on this. 

Thank you. 

2 likes, 191 replies

191 Replies

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  • Bman
    Bman sean73

    Posted

    I experienced muscle twitches for years, all over my body.  Absolutely drove me nuts! It was not due to illness or disease, maybe stress, maybe reactions to something in my diet.  I finally found relief - for real - with a dietary supplement that contained a variety of time released magnesium compounds along with a special form of Vitamin B6.  I know this sounds corny, or like a sales pitch ... but it works! Worth checking out.  Its called Muscle Modulator and I order it at stoptwitch .com  Site also has lots of useful information on muscle twitches causes and treatments.
  • Angela0987
    Angela0987 sean73

    Posted

    Sean73 whatvsisnyiu find out?/if anything..My systems are exactly to yours!!!
    • Angela0987
      Angela0987

      Posted

      My computer keys are really messed up hope you can understand my above post..My symptoms are the same as yours what have you found out? If anything
    • sean73
      sean73 Angela0987

      Posted

      I still haven't found out anything. I went to see a neuro specializing in movement disorders and he gave me all of 5 minutes. Very disappointing visit. He basically made me feel like I shouldn't waste his time if I can still use my arms and legs. He had nothing to say about the area above my knee that doesn't contract except to try physio. My Family doctor was not pleased and ordered another EMG himself. I still have twitching everywhere but mainly in my right leg. My leg still feels weak and aches all the time and I am always exhausted. I did have a positive Hoffman sign but the neuro said it means nothing. So still worried and waiting for the next EMG. It is a really frustrating experience.
    • kim2713
      kim2713 sean73

      Posted

      I have a new appt tomorrow with a different Neuro, the original really brushed it all off and only tested the one side which at the time I had no issues with. Now that it's been a few weeks both sides twitch and I'm showing bulbar signs, of course another area she didn't test. Not a great way to start a new year.
    • sean73
      sean73 kim2713

      Posted

      I hope it goes well for you. Let me know how it turns out. I don't expect mine for at least a month. That's the waiting time in my area.

      My thoughts are with you. This is a scary place to be.

    • scott6672
      scott6672 sean73

      Posted

      I don't understand how a neurologist can do a complete neuro exam in 5 min. I would check on how much your insurance was billed for.

      I have seen quite a few neurologists and none of the exams were completed anywhere near that short of time.

      The last one saw a very subtle tremor in my left calf that effected my gait. Another found a tremor in my left eye at a certain point which also caused double vision.

      Strength tests are measured at 5/5 because even though I may have lost 30% of my strength the loss doesn't register for then.

      I had one blame everything on diabetes cause my A1C was elevated a couple times even though there was no sensory loss in my extremities.

      I do feel your frustration and hope you get real answers soon.

      3 weeks pain free and counting and no one knows why.

    • sean73
      sean73 scott6672

      Posted

      He did a full work up the first time I saw him and it took about an hour. This was a second visit at the request of my family doctor due to the atrophy/dent above my knee. I got the feeling he was annoyed my doctor sent me back. He said he had no intrest in ordering another EMG because I had one 6 months prior which showed nothing. During this visit, all he did was check for clonus, tapped the tendon on my knees very lightly with his finger and saw no movement then made me do a squat with each leg while he held my hand to stabilize me. He said he would send my doctor a report and that was it. Even my wife who was in the room was shocked and felt that it was a less than professional effort on his part to try to figure what is going on. Maybe there is some hope that there is nothing major going on by how quickly he dismissed what was happening to me.
    • Angela0987
      Angela0987 sean73

      Posted

      I just do not understand these doctors. I had to go t the ER Friday due to severe muscle spasms, back of neck pain and muscle twitching so bad I hadn't slept in 3 days..I was ready to admit myself to a nut house honestly..Being sleep deprived made me feel like I was going crazy..I begged them to help me at least get some sleep and stop the pains and twitching..They said there was nothing they could do..My husband was livid!!!! My PCP has me on 1 mg of Xanax and Tizanidine 4 mg... the absolute only way I can sleep. I pray these pains,twitches and neuropathy get better soon. Good luck in your finding.. Hang in theresmile
    • Angela0987
      Angela0987 kim2713

      Posted

      Kim what have been all of your symptoms? And how long have you had them?
    • OntarioDude
      OntarioDude Angela0987

      Posted

      The reason they don't do an EMG all over your body or on the muscles you particularly have problems with is that if it is ALS, it shows up on the EMG in other muscles before you feel weakness in them. One research showed that the nerves start dying about 9 months before you get weakness. That explains why an EMG 6 months after the initial one isn't really that informative. 

      Anyway there are a lot of causes for muscle weakness and twitching. Mine are due to gadolinium retention after an MRI contrast injection which is supposed to only happen in people with kidney problems but my kidneys were totally fine... 

    • Angela0987
      Angela0987 OntarioDude

      Posted

      My muscle don't feel.so much weak as they are achey and joints are stiff. But I twitch everywhere!!! Both knees legs,back neck shoulders feet belly even my butt amd heads ...its crazy... Even my face and eyes.. I have muscle spasms on the front of my neck that are painful and my voice stays horse all the time.. I just need answers... It's such a process of elimination.. Takes time...and I am inpatient due to feeling like I'm going crazy.
    • OntarioDude
      OntarioDude Angela0987

      Posted

      If you don't have a muscle that just completely dropped dead and never came back to life for even a second, an experienced neurologist would be very hesitant to consider ALS. If you have joint stiffness, that makes it even less likely it's ALS since that's not even an ALS symptom. Your symptoms are closer to Lyme Diseases, Gadolinium Toxicity, or medicine side effects. In fact your symptoms are closer to my symptoms. Do you notice you have unsmooth, ratcheting  muscle movement when say you do slow crunches or when you stretch your arms out on yours sides and slowly drop them? Do your joints make a clicking noise and you are not like over 50? Do you feel more clumsy?
    • kim2713
      kim2713 sean73

      Posted

      I will thank you. When this started I must have called 20 offices and it was still about a 2 week wait. The last few appts missed have been from sheer terror of hearing what they are going to tell me.. Keep your head up, I know it's a bad idea to web everythinf ,but I've come across some hopeful stories ..
    • kim2713
      kim2713 Angela0987

      Posted

      Started with twitching in October, but I had also noticed I was having issues with stairs and was out of breath after just 10 steps. I now have atrophy pretty much everywhere, knees, wrists, ankles and I dropped about 20 lbs, 10 of which I put back on after a week of fatty shakes. My mouth is sore ( tongue ) and my tongue just ripples when I stick it out. I'm also having some joint pain.
    • Angela0987
      Angela0987 kim2713

      Posted

      Hope they can find some answers out very soon for you. Mine started off as muscle aches and joint paint..Then it started with the twitches in the side of my knee then both knees and then spread all over head neck hand foot legs belly back shoulder..you name it...And its all day all night twitching...I also hvr muscle spasms in my neck and have not recognize any muscle loss..I don't have much of a appetite maybe thats due to my worrying...Hoping for answers after my EEG..Good luck in your findings.
    • kim2713
      kim2713 Angela0987

      Posted

      Sounds all too familiar. I have another EMG scheduled for the 20th. Seems so far off though.
    • A7xr
      A7xr OntarioDude

      Posted

      What are you referring to with the unsmooth, ratcheting muscles movement with slow crunches or dropping arms from the side. Also the clicking joints? This sounds exactly like me I'm 24 years old and having ALS scares. I've been progressively weak with nurse practioner noting clinical weakness, hyperreflexia, and dyskinesia, dystonia. That bottom part of what you said describes me when moving though. Would like to know what that refers to, thanks.

    • jeremy04366
      jeremy04366 kim2713

      Posted

      Kim, I know this is an old post but my symptoms were exactly like yours. I had nerve tests, MRI, emg and lumbar puncture. All negative. I finally had a muscle biopsy which confirmed myopathy. If anyone has atrophy, pain, swallowing, and twitching but negative for ALS and Ms, please get a muscle biopsy done. Myopathy is similar to these
    • jeremy04366
      jeremy04366 A7xr

      Posted

      Get a muscle biopsy done, get checked for a myopathic change in fibers
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