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Tomdoe

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Feb 27, 2017
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Learn about ALS
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CA
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Los Angeles
Hello to all of you!

I'm hoping you can give me some insight.

I'll note all the twitching and body problems started after a period of extreme stress over some other medical concerns involving an ANA positive blood test with no positive for any auto immune they tested for. The throat problem was from years ago. And I've been taking klonapin daily for anxiety for these past three months.

About 2 and a half years ago I started having a feeling of tightness in my throat. And some times I get a little left over food stuck there. No problem with liquids at all even now.

About 3 months ago I started getting this strange sensation in my right leg that turned into painful tightness in both my legs.

after about a few days that subsided and I noticed body twitches all over from head to toe. When I open my hand and stiffen it out I can feel my joints cracking from the twitches.

Over the next few weeks I started noticing that my left arm started to feel heavier and clumsier no noticeable weakness but it feels like it's not a part of my body at times and i get a burning fatigue sensation when I use it in the slightest. As if I just worked it out.

At the same time I'm noticing I'm making a ton of mistakes when typing and I just feel clumsy with my fingers. Not dropping things and grip feels strong.

My pinky and ring finger on my right side feel like the won't cooperate either and I'm getting these dull pains and discomfort in my joints. Wrist and forearms in particular.

In addition throat spasms and cramps and what I feel like are tongue faciculations but I haven't seen them though. It feels like little pops with kind with kind of tingle feeling after. Or like little electrical tingling with no pop mostly all on the left side of tongue.

I do feel like I keep rubbing my tongue against my left side of my teeth when speaking and biting it lightly. And that I can't get the words out right sometimes on the first try though my family has not noticed anything unusual about my speech. Also My teeth clack together some times when I'm speaking.

My jaw lightly chatters when I keep them close together and I feel like under my right eye I there is a heavy feeling. When I half smile my right side of my face and lips quiver and shake and I feel like there is some muscle loss under my right eye above my cheek bone but no one in my family see it and I'm going to show the neuro at my next apt.

I also noticed when I blew my nose that at one point it backed out into my sinus or something odd. Though that might be from the cyst in my sinus they found.

Brain MRI normal, emg of right arm and leg normal except for faciculations in my right leg and lower recruitment on some muscles but no waves or fibs. 2 neuro have told me not ALS and probably a pinched nerve in spine. Passed all strength tests including jaw and tongue, but I just don't know what to think anymore.

When I bend over the air coming out quivers like my muscles are shaking or something.

Could bulbar take almost three years to develop further and then take over my body this quickly?

Any advice would be great. The neuro who did my EMG is from UCI and is very experienced but all these symptoms make me feel like they missed something.
 
You mention that you've been under stress and have anxiety. The good news is nothing you describe sounds like you have ALS. I wouldn't second guess your neuro on their assessment and the EMG.

Are you seeking treatment for anxiety? It can be very debilitating, cause physical symptoms and take over your life especially if you worry about fatal diseases.
 
I agree with the stress but the physical feeling is so hard to ignore its like I can't stop thinking about it. Especially at night when I can feel every twitch. If it were just the twitches I could live with that but the other things that have developed since are making me so concerned. I feel certain there is something going wrong.

Yes I am working on axiety but I've just read so many stores on these boards that sound like mine it's just so scary to me. I'm only 27 and I know the odds are in my favor but I keep wanting to wake up and had the symptoms go away but they are all still there and feel like their getting worse.
 
Also thank you so much for your response!
 
Tom,

The people here are not able to see ALS/MND in your reported symptoms. You are better off continuing to work with your doctor.

No one here is saying your symptoms aren't real or life affecting, just that it doesn't fit with the pattern of a disease people here are intimately experienced with-which is ALS.
 
Thank you for your response and for taking the time to humor me.

But I read a few people saying their bulbar symptoms began years ago. Would it have progressed quickly or can it really take years to go into full effect?

I don't mean to insist and I'm not trying to find a reason to have ALS it just seems so similar to other people's posts.

The typing issues are the most troubling for me as I'm usually a very good typist.
 
Hi Tom. All those words, all those symptoms, and nothing says ALS, Bulbar or otherwise.
 
Thank you all so much for all your responses. Saw neuro again who did all the reflex and strength tests again and no problem. The faciculations and joint and muscle pain remain a mystery for now. She is referring me to rheumatology again so we'll see what comes of that. Again she reassured me of no ALS. If anyone else has any input though please let me hear it. I don't know what to think anymore.
 
Think no ALS. Doc said no ALS, we said no ALS. Apparently Dr. Google has you confused and he can't actually see you or talk to you, and he is notoriously unreliable!
 
Quick second question. Did any of you experience muscles shaking when relaxing after contracting a muscle? Like imagine I curl my bicep up then when I relax it the muscle shakes and stutters on the way down. Thanks
 
Tom, these are questions you need to ask your doctor about. Several people have answered you already and requested you continue to see your doctor. It's clear you are not listening to either your doctor or the people here who have already answered you. I wish you success with the rheumatologist.
 
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