LeaMoore

Hello Lea,

I am new to this forum and I have come across your posts during my research. I am 29 and had some similar symptoms to you.

I wish you all the best in your upcoming EMG. Sending positive vibes your way.

I do have a question for you as I am in a similar position to you, I am also waiting for an appointment. In one of your posts (last year) you said that you "aspirate" after eating would that be similar to belching or burping? Also about the tongue twitching, did you feel your tongue twitch? how did you find out it was twitching, I have heard people say that they don't feel their tongue twitch, so am I am curious as to how people discover it is happening.

Again, I am praying for you and for everyone on this forum.

Hi Lea, my symptoms started when I noticed my tongue was twitching. I waited about 2 months before I showed my doctor who sent me for tests in hospital (5 days). After all the tests, I was told I had ALS. I couldn't believe it because I had no other symptoms. I was then referred to an ALS clinic. After about 6 months of being followed by the clinic, I started to develop other symptoms ie: slurring of speech. Since then, 3 years have passed and I have lost my ability to speak and eat. I have a PEG feeding tube. The amazing thing is that I am still mobile and have lost no strength in my limbs. I remember how scared I was at the beginning but as time has passed, I have learned to accept and adapt. I still lead a full life and am very happy. I am not in pain. I don't know what to say to you to ease your anxiety. I do hope that you do not have ALS but please keep in mind that a cure is on the horizon and we can do a lot to help ourselves stay around for as long as possible.

Thanks for taking the time to message me.

Yes. I wanted to believe this whole thing was anxiety, but recently (well, hard to say when, because it seems slow and fast at the same time) I have had lots of left shoulder/arm weakness, to complement everything else. This is the same side I have the most hand atrophy on. And I'm getting fasiculations focused there. My last EMG showed a "mild" interference pattern in October in that arm, but nothing else of note. Now with the weakness I'm waiting to see the neuro. But I'm scared and I'm pretty darned sure that it doesn't bode well.

And my shoulder aches after I try to use it. (When use, I mean "regular stuff" like putting arm in clothing, etc.) So does my neck on the left side. I think that some muscles are getting strained trying to help out the weak ones.

I don't know what I expect you to say. Anything would be appreciated. How it started with you, etc.

Thank you again.
Lea

Hi Lea, I have bulbar onset ALS (diagnosed 3 years ago) and if you want to ask me any questions - please feel free.