Back for the thrid time with virtually no swallowing

[Flashster]

Thank you. I have been trying to make a noise but I've not the energy any more.

Kiara - I'm sorry I've only just read your post. I have it from a Elher Danlos professor that my pharyngeal issues (at least at my severity) are very unusual for that condition. It usually affects the oesophagus and gut - I have that symptom as shown in the tests but it doesn't make me choke and I've had it for a long time.

I am also curious as to why the odd person thinks I'm making it all up. If you could see me, my decline, or my tests you would see that wasn't the case.

I just seem to be falling down the cracks between different professions, whether that be ENT, Neuro, etc. Being patient after 2 years of liquids and 4 days of barely anything is hard when there's no more investigations or appointments lined up.

 

[olly]

You can only go so long without food and drink ....then it would be an emergency .
If in a few more days you still can't eat or drink then call an ambulance.
Seriously,if its that bad they have to do something........unfortunatly we can not help.

 

[Alyoop]

What I do not understand is ...... How are you still alive if you are not able to eat or drink anything? Your doctors are not rushing you to the hospital and getting an emergency peg tube inserted. It just does not make a lot of sense. You clearly have an issue which is not ALS. Maybe it's not quite as severe as you are telling us? Why are you asking questions on this site? There must be heaps of sites and forums for people with swallowing issues? Just don't get it sorry. It's confusing. Can you still talk?