Flashster

Hello again Flashster,

I figure you have already Googled Elhers Danlos Syndrome, but I caught a 'thing' down in the Differential Diagnosis' section, talking about something called Marfan Syndrome.

If you haven't read that, give it a look and see what you think. The entire Wiki page was quite interesting, read it all.

I wish you luck with your new appointment. I would drool on their shoes, if I was you! (just kidding)

Hang tough

Hi Flashster,

Reading your posts, it sounds like you do have major swallowing issues. However, if you have had 5 emg's (all clean) and no loss of limb usage, can still walk etc., chances of your problem being als sounds slim. You haven't mentioned any Bulbar onset symptoms, which is a big deal with als. Those are the people who have the worst swallowing problems.

It also doesn't sound exactly like Elhers Danlos either, as that is mostly skin and joints (from what I've read).

I didn't see any mention of a MRI of your chest/throat/head. Maybe that would show something. Ear/nose/throat specialists? Nobody can put their finger on your 'problem'?

ALS people do have swallowing issues, usually in the later stages. That is about the only thing you have in common with this disease, as I read it. You should seek further opinions from other specialists at better facilities, even if you have to travel somewhere to get it.

Just my opinion. I hope you find answers.

Hang tough

Merry Christmas to you and your family! I hope that you are hanging in there! You have been in my thoughts. I've finally written enough to get private messages! So keep me posted!