Seeking advice on neuromuscular symptoms
 

Hello all and thank you in advance for reading. I am a 53 year old Male..
Forgive my sentence structure. I'll try to condense this the best I can.
In Oct of 2020 thumb twitch. Soon twitching moved all over body keeping me up at night. Seen Dr he said anxiety and proscribed Zoloft.
Symptoms continued to get worse. Seen an old school neuro. First appointment I could find. Did physical test. Said no signs of ALS.
Symptoms continued getting worse. Muscle loss all over, body jerks, face twitching, under eye twitching, lip tingling and moving, ringing and fluttering in ears, some throat issues with weird feelings and sounds in my throat.
Neuro agreed to see me again. Did an EMG on arms/shoulder. Said only a mild case of Carpal tunnel.
Continued to get worse. I was referred to UVA. Physical test. Said he seen no signs of ALS/MS.
Continued going down hill. Much more muscle loss all over. All day all over twitching. Wave like fluttering motions in some Muscles when engaged.
I was a very athletic person. Very muscular and in great shape. I know my body and it just doesn't feel or act right.
Main muscles seem to still be strong. Surrounding muscles are leaving fast and shaky.
2 months later UVA agreed to see me again. Another physical test.( Passed) Because of twitching and muscle loss he wanted to do an EMG/NCS that day. Left arm/ leg. It turned out neg. Other than Carpal tunnel. (Can an EMG miss something, with visible muscle loss in those areas?)
I still have strength but seem to be getting more unstable. Still lots of daily twitching and weird body jerky motions. Muscles flex very weird as well. Joint muscles popping and sore and rib cage feels strange often.
Some throat issues are still present like saliva is going to go down the wrong whole. I can swallow food still.
Muscles are way off. I can balance on one foot but you can see the muscles really fighting to get stability.
I'm just wondering what else it could be? I hate to keep pestering Dr's since I had a clean EMG. (I read conflicting reports on those as well).
Not sure what else can be done. I'm at a loss. I welcome any advice or suggestions to help me find solutions. Thank you very much for your time.

Hi Foodguy, and WELCOME!

I can understand how annoying it must be to have been through so many tests, etc., with no answers.

This is what I would do in your situation, but bear in mind that I'm just someone with MS who doesn't know a lot about neurology in general.

I would look first of all at every medicine (rx AND OTC) or supplement I'm taking. I'd try cutting down on them or cutting them out (one drug at a time) to see if one of them might be contributing to my problem.

I'd also look at my diet. Is there some food or beverage that might be the problem? Again, you could try cutting out first one and then another and give each trial enough time so you can figure out if you're improving.

Then I'd look at my activity. Is there something I'm doing on a regular basis that might be causing my problems?

For instance: I've been plagued by a weird pain in the neck/back of the head for some months now. It could be due to a drug I've recently started taking again after not taking it for 10 years. But it's gone on for so long that I've looked at my activity and realized that an inadequate glasses rx I got last summer might be part of the problem. Because I'm not seeing well, I keep straining to see better my craning my neck forward. This is exactly the kind of position that brings on more of this pain. So my attempted solution will be to mention this vision problem to the eye doctor and see if I can get a better glasses rx.

This is the kind of analysis I would do. In other words, instead of thinking in terms of a disease you might have, look really closely at every aspect of your life.

And are you getting adequate sleep? Poor sleep can cause a whole boatload of problems.

These are just some thoughts about possible avenues to explore.

Welcome Foodguy. :Tip-Hat:

Thank you so much agate. I will for sure take all this into consideration. Your advice is greatly appreciated.
This has been a rough road. I really only take magnesium, B12 and a zoloft. I cut out sugar a month back. I was so use to putting my body through tons of tough exercises. Spartan races, Crossfit all sorts of weightlifting. My body could take a lot. Now... not so much.
As hard as I exercised I never felt all that twitching and muscle shaking. Also, very strange how the muscles started disappearing within 5 months.
So much points towards an ALS and yet some things don't. So many different ways it presents. Thank you again for your help.

Hi Foodguy

Welcome to NeuroTalk :).

I think that agate has offered you some good suggestions.

All the best.