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!

This sounds very much like my case, and I'm sure like that of many other members here. I finally found some answers, and I'm hopefully on the way back to health. In my case, someone finally asked the right question about gluten in my diet. I read William Davis' book, "Wheat Belly," and realized how my digestive tract had starved my nervous system for years. I've gotten great advice on rebuilding by visiting this site. From what I understand, if all the tests are negative, the doctors are content to just call it "idiopathic," and not read about the gluten connection that plagues so many of us. It's not idiopathic; it's idiotic.
Anyway, you've come to the right place for help. Check out the B12 sticky; but understand that your body won't use what you put into it until the receptors in your gut re-grow. Gluten can be nasty and destructive.

Hi,
I've done the Transglut.-IGg lab test for gluten and it was negative; a dr told me it is the best blood test for gluten. Any thoughts on other tests for gluten?
Thanks!

If it can't hurt to try it, then it can't hurt to try it.

The proof is in the eating (or in this case, not eating ). Whether you are or aren't celiac (or anything else for that matter), if avoiding/eliminating something from your diet improves how you feel, isn't that what really matters?

I test negative for every diabetes test they throw at me, but avoiding/eliminating sugar improves my symptoms. It took me a while to figure that out because all the tests were negative. There are other foods I've learned to avoid because of the way I feel afterward as well, whether PN related or not. It really doesn't matter to me what any tests say (I was always good at passing tests anyway ), as long as eliminating those things doesn't negatively impact my health.

Try going gluten free for a few months. If you don't notice any improvement, no harm done. If you feel better, then COOL!

Doc

Hi Anabanana,
Not too sure how this site works and whether you will recieve this via e-mail but...
Your symptons are more advanced than my own but VERY similar. Just wondered how things are now as your last post was in 2012.
Thanks

Nice nic lol. Okay this may help you as well.
I have the exact same symptoms that developed over time along with PN being complete muscle weakness and lots of pain in the knees, ankles (only when I walk) and impossible do walk down stairs without grabbing a railing. Basically I should have had a cane just to leave the house.

My doc put me on Diclofenic and from the very first dose it all went away and I take 2 a day for the last 12 months and I tried stopping and all the symptoms came straight back. Its an anti inflammatory drug that may take care of the inflamed part of the PN that maybe distorts the signals to your leg muscles??. Those pills saved my life and Im not kidding