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almnz418

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Good afternoon everyone, I just want to say that I admire the courage and helpful atmosphere exhibited by the members of this forum. I have been on here on and off since last October when my symptoms started.

Just to give a brief history I began having odd sensations in my upper thighs almost as if my legs were heavy and there was also some soreness as well. I am 26 years old and besides being overweight had never had many health issues. It was at this time that twitches started in my legs specifically my upper quads(proximal muscles), I proceeded to ignore these changes.

Less than a month later I noticed my upper thighs and groin area had become flabby and the skin was loose, it appeared that gradually the muscle tone was changing and that I was losing mass in these areas. It was at this point that I saw my GP and he was concerned by the rapid decline in these areas(had also progressed to upper arms and shoulder/deltoid areas).

The first neurologist I saw was dismissive because of my age and the fact that I was able to pass his clinical ALS exam. I was told to go home and relax, but this was hard for me because of how quickly this had come on. A few weeks passed and the twitches in these areas became more frequent and it was effecting my sleep, I returned to this Neuro who gave me a very rushed EMG/NCV which he says was negative and "normal". It was at this time that I also noticed the same loss of muscle mass in my forearms/wrist area. My function was slightly reduced but I could still turn a key and button a shirt but I know something is wrong.

I decided that maybe I was imagining these symptoms and decided to try and move on. Now I was ignoring these symptoms again for months until March when I saw a dismissive Rheumatologist who did note muscle loss around my shoulders and wrote that he was sending me to another Neuro for further consult he did not feel it to be auto immune despite my Auto Antibody test coming back abnormal.

This new neuro was a very nice lady who again performed a clinical exam babinski, toe walk, heel walk etc which I was able to perform. She was satisfied that there were no upper motor signs in the exam but she was still concerned with the twitches and the noted muscle loss. I was then sent to another Neuro for a thorough and proper EMG, the DR. was an Electrodiagnostic expert and was very confident in his ability. He proceeded to EMG my forearms, hands, feet as well as shoulder/Suprapinus area. The findings were normal he said my EMG was normal and he saw nothing of concern.

I left his office confident that perhaps this wasn't MND but still upset because of the progression of the symptoms and lack of answers. The muscle loss in my inner thighs(both sides) is substantial but I can still stand from a seated position and climb the stairs as well. The shoulder atrophy which was noted by the Rheumy as well as my GP is troubling because I twitch in those areas and although I can still lift my arms they aren't as strong as before I can sense this when carrying groceries etc.

In conclusion thank you for any PALS or CALS who took the time to read this being that my EMG was normal and I still don't have answers. There are instances where the twitching is so bad that it will jerk my fingers and I can see the Thenar area twitching rapidly I also have these twitches in my calves and buttocks. Just frightened and feel like I can't get answers from anyone medically or personally. I know the EMG is supposed to be conclusive but perhaps I have a rare variant of MND that is harder to detect, I am hoping it is CIDP or perhaps a Myopathy but I am not sure. Thanks again and I hope to hear feedback from anyone who can help.
 

Atsugi

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EMG is the gold standard test. You don't have ALS.
The clinical exam shows you don't have any weakness. ALS is all about weakness--paralysis, actually.
We're not doctors and can't diagnose you, but we know ALS pretty well, and you don't have it.

Don't sweat the twitches. Humans often twitch as we get older. It's meaningless.
 

almnz418

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Thanks Atsugi. I just know there are some PALS and who had a clean EMG prior to diagnosis. Perhaps a LMN variant or a myopathy that didn't show up. It's just strange that my doctors admitted the muscle loss and acknowledged twitching but are still not concerned. I am just worried because of the progressive nature of whatever this thing is.
 

almnz418

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Also the fact that it is primarily in my proximal muscles may make the weakness less apparent as the standard distal weakness. Thanks again.
 

Atsugi

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Joined
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Lost a loved one
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Thanks Atsugi. I just know there are some PALS and who had a clean EMG prior to diagnosis.

If there is any PALS who says they had a clean EMG, we would love to know who that is. It's unbelievable and bears researching so as to not mislead others.
 
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