Recent content by Pandora2013

Nope, haven't heard back. Nothing can be done regardless of what it might be anyhow so I will just give it a few months and see if anything changes. It's not getting any better though. Hopefully I can afford to see at least an ENT in a few months! Thanks for checking in with me. Tam

I understand. Am having similar fears and issues.

Thank you. Don't go out of your way. I will just see a Dr once I am working again.

Remember I was not posting about twitching, I was posting about my palate blocking my nasopharynx when I exhale out my nose. I wanted to see if that might be a bulbar symptom. I am not just some crazy twitcher not trusting my neuro. If he had emged my tongue and palate and it was all clear, then...

Yes I emailed ALS Assoc, no response yet. I have been to the BFS site for years. It is futile there. They all have anxiety and fibromyalgia (nothing real). I already know I have BFS, and those people on BFS site can't answer a question that only someone with ALS can answer for me. Just whether...

I understand your anxiety. I have issues, clean limb emg on last neuro visit but my 'bulbar' stuff started after that and now i am worried about weird symptoms I have with my palate but cannot go back to Dr because I have no insurance, so am also in limbo land. So yea same thing... didnt get...

Thanks Steve. I was just trying to find out if this a possible symptom but people seem to think I am just some uneducated person about als and I know the people here are not Drs and I know ALS does not go away. It has been a month since this started and doesn't seem to be getting worse - just...

Hi, I have BFS and have been having the same issue with swallowing as well as my palate blocking my nasopharynx at times when breathing out my nose. Not sure what it is either. I tried the forum and no one had patience for me either, so it might be best to find some ENT sites or something. The...

It is hard to explain but here it is simply put. When I exhale out my nose, my palate seals off my nasopharynx area so I cannot exhale out my nose. Like a quick exhale out my nose, and it is blocked from the back, so I have to breathe through my mouth instead. Kind of like if someone puffs out...

There is no 'sorting out my insurance'... I have no insurance and cannot afford it if I could get it.

My palate is sealing off the nasopharynx when I exhale out my nose, up meaning up and back. Like when you hold breath in your cheeks and your palate blocks your nose... it does that when I breathe out my nose..... I know because I can feel it. And hence, it blocks the exhale. I didn't mean it...

It was just a question if anyone here has ever experienced that. I Know an ENT doctor can help but I have no insurance so therefore, cannot go to one. Sorry to bother you.

All I was asking was if anyone with bulbar issues has experienced this weird flappy thing happening when they exhale out their nose. I know the twitches are benign. I am not even bringing that into question. I do trust the limb EMGs I have had. I do live my life, I was just asking a simple...

I have been having a weird situation where it seems that when I exhale through my nose, my soft palate is rising up and blocking the flow to my nose from my lungs. And the harder I blow, the more it is blocked. If I release the blow and try again slower, it works fine and the palate is not...