ALS Support Community

On the top of these I have: CPK/CK normal.
I have excluded everything else (thyroid, B12, MRI brain /full spine ,majority of potential autoimmune diseases).
Sleep study I had was poor oxygen drops 86%. I have the same feeling like you, even my breathing muscles fell weak. Tongue got smaller.
Currently I am in the stage of muscle MRI. Lets keep in touch maybe we have something very similar.

It has to be als right. I can’t think of anything else

We should have a positive emg, I am lost. Which vaccine did you have taken?

Have you done any blood tests?

My cpk was high. 210. I only had one emg . A few weeks ago. I have had this since early June. I think it’s still early. Emg’s aren’t perfect. It’s gotta be als. What else is there

I can’t really sleep at all. Not sure why. Seeing sleep doctor Thursday

I had the same issues in the beginning, I was was sleeping 1-2 hours for 2 months. Have you checked your heart as well? I would suggest as well pulmonary check to conduct lung muscle tests (MIP/MEP). I am sleeping with bipap now. Still not diagnosed.
Where have you lost muscle and in what ~percentage? In theory we should have abnormal emgs. I have lost approximately 30-35 % muscle and emg deadly silence.

Btw my symptoms started gradually after covid vaccination.

Losing muscle everywhere. Legs arms back. 20 pounds. Who knows.

How much sleep do you get now.

Now I sleep about 8 hours daily with my bipap. Probably after your sleep study you might get CPAP or bibap support. Have your urine smell changed at all or your saliva smell? Looks like our bowel muscle is affected as well which is not quite normal for the ALS standards.

I have lost 40-45 pounds in 4-5 months btw

Urine not changed but more yellow. Does your diaphragm feel weak. Is that why the machine helped. Saliva same. You never took a hair loss drug by chance.

It does feel a week. Literally all off my body muscles are wasting really abnormal. Yes machine helped a lot. No hair loss drug. Everything happened after my COVID-19 vaccine. Have you been vaccinated?

Urine more yellow as well, how is your tongue and gums?

It does feel weak*

Yes I had the vaccine. My tongue seems a little smaller. Gums seem the same I guess.

My tongue is smaller as well and my gums are getting weaker.