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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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  • scott6672
    scott6672 sean73

    Posted

    I had/have same issues since 2011.

    I am currently being seen by a genetic pathologist at The Cleveland Clinic.

    Currently so far it is a late onset fatty acid oxidation disorder.

  • Dylan1123
    Dylan1123 sean73

    Posted

    A lot of neurological disorders can present itself Like a.l.s around 4000 but the chances of it being a.l.s is slim my guess is that you went symptom hunting online only a neurologist can prove its a.l.s
    • scott6672
      scott6672 Dylan1123

      Posted

      Like some other disorders, ALS is diagnosed AFTER ruling out many others.
  • sean73
    sean73

    Posted

    Thanks guys. 

    I had someone I know pass from ALS last year so that's why is is a major concern for me. They had bulbar so it happened very fast. Yes I did do some research also and everything I saw that included twitching, weakness and atrophy seemed to point toward ALS.  I really hope I am over thinking this just having troubles with wonderful how my family would manage if it turned out to be ...

    i am anxiously waiting my next neuro appointment to try and get to the bottom of this. 

    Thank you again.  

  • Dylan1123
    Dylan1123 sean73

    Posted

    scott like I said befor theres over 4000 neurological disorders with your symotoms that closes it to up too 200 

    B.F.S

    M.S

    Progressive bulbar palsy (PBP)

    Progressive muscular atrophy (PMA)

    Primary lateral sclerosis (PLS

    Peripheral nerve damage (peripheral neuropathy)

    Mononeuropathy

    Myasthenic syndrome.

  • daiku
    daiku sean73

    Posted

    Have you done tests for MGUS/Multiple myeloma and Multiple sclerosis?

    I Have similar symptoms as you. Neurologists also said BFS and not to worry about ALS but didn't really help to solve the issue. I have a condition called MGUS (abnormal protein in blood) which I believe may be causing the twitching.

    I also suspect MS as I did a spinal tap and it shows one oligoclonal band (oligoclonal band are non specific but always present on patients with Multiple sclerosis )

    If you haven't already, I would ask for an MRI of brain and spine, a spinal tap, and do serum protein electrophoresis (blood test usually ordered by Hematologist)

    Hope this helps and you find some solution to resolve your twitching. I am still searching ... (symptoms started a year ago)

    • sean73
      sean73 daiku

      Posted

      I had an MRI of the brain and neck done last week and I am awaiting the results which I will post, hopefully next week. 

      The twitching is bothersome but my biggest worry is the thigh atrophy on the outer quads and the constant aching in my leg.  The muscle looks sunken in but is still hard when flexed. 

      Thank you for the information. I appreciate the replies from everyone. 

  • thestolenolive
    thestolenolive sean73

    Posted

    Chiari Malformation!  

    Look up Conquer Chiari {dot} org.

    • sean73
      sean73 thestolenolive

      Posted

      Thank you I will have a look at that. 

      My appointment with the neurologist is tomorrow afternoon so I will inquire about all the different possibilities. At this point I'm praying what ever it is that it is not terminal. 

  • Beck44
    Beck44 sean73

    Posted

    Hi sean

    I am a Registered Nurse and I have Chronic Fatigue Syndrome. I have had it for 8 years and am experiencing new neurological symptoms such muscle twitching and burning. I use to work with a Dr Specialising in Motor Neurone Disease. This is a horrible diagnosis of which muscle twitching and weakness were part of. I know what it is like to want the diagnosis so that one can start therapy asap. There are some therapies for MND but no cure. I wish you the best possible outcome and a diagnosis soon.

    best wishes from Sydney Australia

    Beck44

  • Angela0987
    Angela0987 sean73

    Posted

    I have the same exact symptoms.MRI came back normal...In will not give up til they find out why I have all these problems. It is really strange but our symptoms are exactly the same...wow..Please keep us abroad on what they can come up with on your end.
    • sean73
      sean73 Angela0987

      Posted

      My MRI just came back normal also. I saw a neuromuscular specialist and it was a rather disappointing visit. He seemed annoyed I was referred to him. Basically he said not to come back unless one of my limbs stops working. Since I was able to stand in either leg he dismissed the atrophy. My family physician was not too pleased and has requested another round of nerve conduction studies with an EMG. Now it's a waiting game ... Again.
    • daiku
      daiku sean73

      Posted

      Sean,

      My story is similar to you. I have constant muscle twiching and muscular but neuro muscular specialist just came up with Begnin Fasciculation Syndrome to explain what was going on. However I believe the twitching might be caused by the abnormal protein in my blood. The spinal tap also showed 1 oligoclonal band which is a sign of inflamation and a marker of MS. if you are interested the test for MGUS/Multiple Myeloma is called SPEP and the for MS, you need to do both a MRI of brain and the spine.

    • Angela0987
      Angela0987 daiku

      Posted

      I agree with you..I have very high C reactive protein ..which I have alot of inflammation in my body...I am overweight which doesn't help..I have had this high C reactive protie n for 6 years which my symptoms when they found that out was severe joint pain...Which I still have ...My new symptoms are the exact symptoms to Sean. My muscles twitch constantly. And my right calf hurts all the time...And it feels like it has a knot in it..I also have tingling in my face....

      The sad part is I have gone to my PCP, a Rhematology Dr. And a Neurologist.. None can figure this out...I will not give up til they tell me what's wrong with me... They like to make you think it may be in your head which really furiates me..

    • Angela0987
      Angela0987 sean73

      Posted

      A EMG will be my next step in this process.. Please keep us posted and I will as well to my findings. I was really surprised when I can across this forum and saw someone had the same exact symptoms I have been having.. good luck to you. Hope we all can get answers soon..Its all trial and error...Process of elimation..
    • Angela0987
      Angela0987 thestolenolive

      Posted

      My MRI said minimal scattered foci of increased T2 signal intensity are likely of limited clinical significance. I am extremely upset that I have had my results for a week and the doctor never call to explain. She wants me to come on today...I'm not sure I even want to hear what she has to say,as I have a appt. With my PCP and she refused tocsend my MRI reports to him for him to look over as well.. So what's you alls thoughts on this?
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