Hello everyone,
for the last 2 years, I have had ongoing muscle twitching along with progressive muscle weakness in my lower body(legs) and lesser extent fingers/hands/arms/shoulders. As this has progressed, I began feeling more strain on my feet/ankles, knees, and low back/hips, I believe from the muscles becoming weaker. I have trouble going up/down stairs/ getting up from chair, cannot squat, and cannot run/walk fast if my life depended on it.
I've had 2 EMG/NCS done at 2 different ALS clinics, 9 months apart; NEUROS said results are NORMAL. They seem disinterested to do further testing because of the "normal EMG/NCV". I am really upset, because I know this is real(physical process), and I am hitting the wall.
I hope some of you have input into my situation, as it is getting desperate. I know that the NEUROS are wrong: not so much on the 2 EMG/NCS they deemed NORMAL, only that if THESE EMG/NCV are normal, then they need to be looking for the cause of my progressing muscle weakness with fasciculations elsewhere or in a different way on the electro-diagnostic testing.
Are there different methods of doing EMG/NCV, that may show different causes of my symptoms? Could they be doing the EMG/NCV in a way that they are missing some part of the picture? The NEUROS say that they don't see MOTOR NEURO DISEASE(lower), but if it's not that, then what else could be causing the combination of fasciculations(twitching), muscle weakness, and atrophy- What types of disorders?
NEUROS like to say it's benign twitching, but my twitching is not benign...
I have progressing muscle weakness along with the twitching and loss of functionality. I have symmetrical muscle loss around my elbows(they've become body knobs and difficulty raising arms for more than 30 seconds, and the rest of my arms have become fatter, because I have gained weight due to my inability to exercise). I am in my 30's and was very active prior to this coming on slowly. The muscles around my knees has become thinner(quads/muscles outside of thighs that attach to knees, more indentation around knees)
Many blood labs I've had are coming back normal (for typical for causes of weakness). Cervical/thoracic/lumbar mri, normal.
I am becoming increasingly frustrated with the NEUROS, my progressing condition with no answers and confused why my weak, atrophied muscles around my elbows, knees/quads are not coming back with ABNORMALITIES on the EMG/NCV studies, when there is obvious deficit and loss of functionality in strength. The neuro clinical exams seem like useless BS, unless you're already dragging your leg. The next time I see a NEURO, I will ask them to watch me walk up and down stairs or try to get up from the floor (I can't). Furthermore, I also have chronic pain and twitching in my feet too.
If anyone has any input into my situation, please help
I don't know what else to do....
Is there anything more I need to look into, anything else to test?
I have not done any neuropathy antibody testing and am considering a motor neuropathy panel from Athena Diagnostics; but, the NEURO said that in "THEIR EXPERIENCE WITH A NORMAL EMG/NCV", that there is no need to test for neuropathy antibodies. Can NEURO be wrong, can an EMG/NCV be "normal" and still have some type of neurogenic process happening where neuropathy antibody testing can give more answers?
Sorry this is so long, but my case is complicated.
Very grateful for your insight, knowledge, and suggestions!