New here ~~

[Guest guest]

Just diagnosed last week. Have some questions.

History: I'm 71. Started about five years ago. Only occasionally, and first

presenting as " drooling " on my pillow. Then, what I called " back swallowing "

where food from yesterday would suddenly be in my throat. All of this on

again/off again. It was very evident it wasn't GERD (absolutely NO acid). I've

had esophageal spasm off and on since my thirties, which IS really painful, but

none of this stuff was. My doc wasn't too concerned, and said when I was

bothered sufficiently, to let her know, and she'd refer me to a GI guy. Never

happened till this year.

This year has actually been more comfortable: none of that awful throat-grab

sensation that won't let ANYTHING down. Now it all goes down, and right back

up. I've become a master of concealment: I carry spitty cups everywhere I go.

Don't eat in public. Thanksgiving and Christmas have become my idea of hell.

This spring I really began to lose weight. Went from 180 in April to 120 on

September 28 the day I was admitted via ER, with seriously out of whack

electrolytes and massive dehydration/starvation. I'd tried to wait till an appt

with my own doc, but three days to go, didn't think I'd make it. Called in,

told 'em what was going on, and they sent me to ER, post haste.

Irony, is I'd seen that bird's beak, and decided that wasn't ME. Everything *I*

was experiencing was in my THROAT. . . . When I saw my own during the barium

swallow, I was embarrassed for myself. I laughed, and the Radiologist said:

you've seen that guy, eh? Yep. You've been on the internet, haven't you? Oh,

yeah. But I'm a lousy doctor.

Now questions: Virtually EVERYONE except the GI guys seem to have confused it

with GERD. Got GERD meds on discharge. With a 5mm opening, got prescribed a

potassium pill at least 12mm which was going to stick in that opening and burn

the heck of of the esophagus. Maybe the fact that I'd been admitted because of

the potassium (which was under 2), and was in a cardiac unit, made for less

enlightened care? At this point I'm really scared of my possible care.

On the barium swallow, no indication of a bolus. And the endoscopy seems to

have opened the LES just a skosh, but my blender is still my New Best Friend.

The GI guys seemed to think Ensure or Boost would/could do it. But I find the

blender a *much* better solution.

At my age, I'm worried I'm just about at the end of them being

ready/willing/able to operate, and wasting time with dilation or botox. Does

anyone have a sense of how well/long either of those last? The GI guys seem

enamored of both (because it's stuff they can do?) UVA which is my nearest GOOD

hospital isn't high on the list (elsewhere on this site). How much trouble IS

it to travel? Can one just *call* the Mayo Clinic, and get an apt and a date in

one visit? Or any of the other Big Clinics? I'm on Medicare, is it going to

cover anything?

ly, at this point, I'm more afraid of dying of starvation than anything as

my weight is starting to drop again. (They got me back up to 133 with

rehydration, but it was 129 again this morning.)

I live in the backwoods (almost, lol!) of WV, about 40 miles from the nearest

hospital, and only GPs in the county. Have to go over to VA to find any

specialists at all.

Most of you guys look like kids to me. Any one here been diagnosed *this late*?

And thank you all for being here! And for any help!

xox,