No idea what's wrong with me. ALS + something else?

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Kefka

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37 year old male..

So for 3 months I have been going through a weird range of symptoms and the first 50-75% of these aren't going to sound like ALS at all, but I'm still concerned nonetheless. I'm going to tell the whole story; even the parts that sound nothing like ALS.

It started March 24th where I first began what I (and several doctors) assumed was a mild bout with covid 19. I had a runny nose, and a few days later turned into a sore throat. A few days after that I had a very bad dizzy spell. It lasted maybe an hour. A few days later I woke up covered in sweat and had a little bit of trouble breathing. At this time it was nearly impossible to see a doctor so my doctor just told me to go to the ER in suspicion that I had COVID (I had a co worker test positive after all). Lungs were fine, my breathing was slightly inhibited, but it got better over the course of a few days. A few days after that the dizziness came back, and it lasted for 3 weeks. Towards the end of that my doctor put me on antibiotics (discovered I had an ear infection). During this time my neck started to get really sore, almost like I was being pulled down by the back of my neck. At the end of the antibiotics the dizziness was gone for about 3 days and my neck was also better. Then it came roaring back for another 3 straight weeks. Multiple times during this, I was tested for covid; negative each time. A month later I'd take an antibody test; also negative.

I also had diarrhea for 3 weeks followed by 3 weeks of constipation. More non ALS stuff, I know.

At one time a really weird thing happened: I had a headache that got increasingly worse throughout a whole week that got so bad I was actually crying. This same night, it felt like something dripping deep inside my right sinus and at the same time my headache was steadily getting better. I woke up with no headache or dizziness.

One night while sitting in a chair I noticed what felt like my esophagus slowly convulsing on it's own. Very very strange sensation. Since then I've had periods where it's not hard to swallow, but uncomfortable, almost like it's happening slowly. This will come and go for about a week at a time.

A few days later, I started to feel like what I can only describe as a bubble in my back when I sat in a chair basically in the middle of my back on the middle of my spine. That turned into spasms all over my lower back, like I was sitting in a massage chair. That is still going on now from the middle of May. My neck started to get more and more sore, as did my back. The dizzy feeling came and went a few times for a few days, but not as bad and eventually completely gone. Later the spasms would also happen on my stomach, and then also my shoulders. Most of it wasn't even actual visible spasms, just what felt like spasms inside me. At one point it felt like a painful vibration right on my spine. Almost felt like a river flowing through me. A few days later that same sensation occurred behind both of my knees and, oddly, also in my testicles. That lasted about a week off and on. My neck randomly got completely better during this time.

Then another week later, started getting twitching, all over. Big toes, both hands, both knees, left eye, my neck and elbows. This was last week. As that happened my neck started getting really sore again, the esophagus spasm/convulsions came back and were much worse, it felt like I couldn't hold my neck up at all, my jaw was uncomfortable and it was uncomfortable to swallow. Last week until today this got progressively worse. I was laying in bed in serious discomfort as if a cross section from the back of my head to the front of my neck was nearly paralyzed and my head was just crushing my neck.

I had had an EMG done of arms and legs. I'll post the pictures of them in their entirety below. Until this morning I was 100% convinced I had ALS with bulbar onset because the EMG, although state everything is in normal parameters, showed that my left side amplitude was nearly double my right side in my arms and legs and that because the neurologists never listened to me to EMG my neck were just missing it. After all my right arm feels tingly, like if you got a sun burned arm caught in a spider web tingly and my right leg feels a hair stiff.

But then last night it got more weird. My right cheek and nose started to feel the same weird internal convulsions I had early had in my back and legs a few weeks ago. My throat and neck started to do the same. My ability to swallow was bad one second and fine the next. This weird event lasted 20-30 minutes. Right after that I noticed I could swallow fine again and my neck didn't hurt nearly as much. All of today my neck has held up strong. I even walked 3 miles holding my head forward to really test my neck. It's like it did a 180 over night. I assume with ALS that would be impossible? I'm lost.

Over the past 3 months I've had a litany of tests trying to get an answer. I was tested for lymes, although only 8 days after being on antibiotics (currently waiting for results of a second test), celiac, ANA, have been MRI'd from head to pelvis, x-rayed, about a dozen other blood tests. Nothing has been found. Even at the height of me being dizzy and with an ear infection, my immune system was barely elevated.

EMG results are below. One neurologist said I 100% do not have ALS or MS (MS is obvious from clean MRIs), despite right side reading half as high as left side for some of the results). Second neurologist who did my legs said she sees no sign of ALS despite the same right-left problem, but because I was so concerned she wants me to have a follow up in 3 months at a bigger lab to be completely sure.

Other weird things I forgot to mention: I've had sore eyes come and go. Lasts about 2-4 days then goes away for 2-3 weeks. Also about 4 times a week I get a shooting pain in my head that I never got before. Almost 24/7 it feels like there's a drop of water hanging from my nose that isn't there. Every morning I wake up with a very dry throat. When I flex my right shoulder (trap muscle), it's nearly twice as big as my left. This was another reason I thought ALS. Reasoning being my shoulder is lifting more on that side because my back is getting weaker?
 

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KarenNWendyn

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Please read this if you have not already done so

None of what you report sounds anything like ALS and your EMG is textbook normal. So this means you don’t have ALS.
 

Kefka

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Karen, I appreciate the quick reply. So the difference in amplitude on both sides is nothing to be concerned about? After the neurologists told me nothing was abnormal I was relieved, but then when another doctor asked for the results and I picked up the EMG results from them and saw the differences in right and left I've been wondering what that's about and have been concerned.
 

ShiftKicker

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I am hoping you've had a look at the link Karen took the time to post to you along with her reply. As she states, nothing you list adds up to indicate ALS. Your multiple tests and exams by specialists, who also state you do not have ALS, confirm this. Your list of non-motor symptoms all add up to something else. Keep working with your doctors and hopefully you'll be able to figure it out.
 

Nikki J

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You are looking an something on your nerve conduction study. 1 ncs is usually normal in als and any abnormalities point away from als 2your emg is indeed normal 3 your doctors saw no ALS nor do you describe it
 

Kefka

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ShiftKicker, without realizing, I thought that was a forum ad until you mentioned it. Thanks for pointing that out to me. I'm sorry I didn't read that first. I appreciate everyone's help. Really, thank you so much. Back to square one for me.
 
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