bulbar question

[Cattl]

Hi
I have been checked out by 2 well respected NEOURS. Mayo clinic
and Dr Eva Feldman. I will not not go into such details I posted here once .
They told me BFS . I had been fasculating in legs first and below knee 24/7(still do now)
now they also bounce in thighs and arms some stomach and the back periodically..they stop in all muscles if I flex or use

I didn't ask them about bulbar as I was so nervous. regret

So my question is with someone with experience or knowledge..

Would I feel the weakness in my voice? I feel like its strained after talking for a bit and have to clear throat often. No swallow issue.. tongue strong clinically no tongue twitching nor atrphy at all. So its a feeling of tightness bottom of neck area of throat and a strain to talk. Only slurred a few times 2.5 months ago that I noticed hasn't progressed or slurred more(that I noticed and though was unusual before the twitching started). People say I sound fine voice may sound deeper..it is .. would it be picked up by the 2 specialist on The ONSET?? or do you not feel the heaviness it just projects weaker to others in the voice? its like dry feeling with a low vibration feeling
no neck twitching or shoulder to speak of or face...neck feels achy sometimes on sides like kinda tight -stress taking this to extreme level or is a possible onset
..
2 great members answered this but unclear if I asked correctly the first time

thanks for letting me ask

 

[Atsugi]

Look in a mirror and move your tongue up, down, left, right.
You don't have bulbar.

 

[KimT]

Tightness and dry mouth could be stress. Glad you were cleared!

 

[Cattl]

I do realize that at the moment its not diagnosed and I doesn't look like it to others. I know this site is also for those who have been and have real issues to discuss.I mean no disrespect
in any sense. The clearing of throat after drinking something and all these twitches scares me ...with tiredness of speaking ...do you feel that or is it just weak that you dont feel). I'm just Im looking for insight on how onset would present itself early. If it is possible... trying to understand on how to talk to my family. I dont want to cause them stress as i feel now. I just didn't have closure to my exams due to my fault not clarifying , but voice wasn't that bad a few weeks ago..and haven't been myself to my family it's getting obvious...I made appointment to see someone for anxiety whether I do or don't ...I hope people will read this and understand that just want to get some closure besides reading internet stuff that made me 1/2 crazy already

 

[KimT]

If what you've read from us doesn't reassure you, please go back to your doctors. You can't get closure from us.....only from trusting what your doctors tell you.

 

[Cattl]

I understand just have to wait months again..thanks

 

[Atsugi]

I understand just have to wait months again..thanks

No. No. No. That's not what you have to do.

You need to accept that the problems you're having, the symptoms you have, have been firmly and solidly determined to NOT be ALS.

You need to start thinking "what else could this be?" and follow your doctor's advice. I think you need two doctors: First, a GP who can manage the investigation, using whatever specialists are appropriate. Second, a psychiatrist, preferably with gray hair. This one can both manage your anxiety and determine if there is something more sinister going on in the mind-body arena.

 

[affected]

honey what you don't understand is that you are not describing bulbar onset.

We won't describe it to you, or you will imagine that what we describe starts happening. But I can tell you - you do not have bulbar symptoms.

As Mike says - back to the doctor and ask for a psychiatrist to help you work through this while your GP keeps on working with you. We can't really do or say anything more.

 

[Cattl]

I really appreciate your time to answer from all of you.
have a good day