Hi All, new here and undiagnosedHi

[Guest guest]

Hi All,

I have been through the ringer tis past year and a half. Have had test after

test, and the doctors can't find anything wrong with me that would be the cause

of my symptoms:

Lost 42 lbs. in 9 months (not dieting)

Constant pain in upper centre abdomen and chest behind breastbone worse after

eating anything

Afraid to eat

Feels like food sitting in my lower esophagus

Not Heartburn

Sometimes feels like I am having a heart attack (went to ER 2 months ago)

Nausea

Fatigue

Have had the following tests:

Blood Tests (normal)

Barium Swallow ( HH, GERD)

Chest X-rays (normal)

Ultrasound (normal)

Gastroscopy (inflamed esophagus, surgeon wondered if motility disorder)

CT scan (normal)

What meds and other things I have tried

Raised head of bed

Eating smaller portions

Taking smaller bites and chew, chew, chewing

No alcohol

No carbonated beverages

Stayed away from chocolate, mint, tomatoes, spicy foods, hard to digest foods

eg: (cabbage, lettuce, uncooked veggies)

Thought maybe I have problem with Pancreas, so stopped eating fatty foods

Tried Pantaloc, Prevacid, Nexium, and Tecta...did not take away the pain

Doc put me on Domperidone...tried for 30 days...did not help at all...made my

heart race

Now the GI (who had the worst bedside manner ever! And who said there is nothing

she can do for me...just blew off the Surgeon's suggestion of Motility

disorder!) put me on Viokase (pancreatic enzymes). I am afraid to take them, as

a Motility disorder hasn't been ruled out. Wouldn't digestive enzymes be

dangerous for my esophagus with Achalasia?

I am trying to get an appointment with a new GI which in Canada could take

months! So in the meantime...I am trying very hard to live with this pain. My

husband asks me everyday how I am feeling...it is so disheartening to have to

say " the same " . I know he hopes that one day I could say I feel great! I wish

I could too!

This has changed our lives drastically...we were to go to Toronto at Christmas

to spend time with my daughter who was going to be there from NYC, but I was so

sick in Dec., we had to cancel our plans. That was really hard.

Has anyone else gone through test after test with no diagnosis...even though you

KNOW there is something wrong? What do you do then?

Thanks for reading this...

Margie