in Orlando

[Guest guest]

Dear , in Orlando,

How well are you eating? Is your main problem pain or eating? Either

problem, the best suggestion, it seems always, is to contact the heads

of the departments of the largest teaching hospitals that are feasible

for you physically and financially (gi or chest diseases if you are

having trouble eating) and see what they suggest. IFFF you have a

diagnosis, such as achalasia, or any other very rare disease they will

contact you right away. IF the pill stopped going down possibly the

radiologist that did the test didn't know what he/she was seeing. The

manometry isn't a dream test, but it isn't really dreadful, there aren't

any cuts, nothing permanent, no risk of infection. But there is skill

necessary to perform it properly. Most hospitals will make you redo

tests at their facility if you move to another one. So start at the

best facility you can right away.

For achalasians, the pain can be very high, but eating and drinking are

often the worst symptoms. If not achalasia, there are other motility

disorders, such as has, or constrictions or other things, that

cause swallowing problems. Are you regurgitating? That is confused w/

vomiting among those who don't understand, including doctors. Regurging

doesn't take icky, comes right back up, not the severe spasm like

vomiting. Many doctors don't believe us when we tell them that. Often

liquids are more difficult that food.

If your symptoms are more pain related than swallowing related, you may

have to go through the same tests, but you still need to have the tests

done at the best facility you can find and by heads of the department.

Perhaps keep a notebook and have all your old tests compiled together, a

more experienced doctor may read them differently.

It is easy for those of us already diagnosed to get to the heads of

departments because we benefit their prestige. Perhaps you need to

contact them, suggesting you have achalasia???

As far a worrying how you got whatever problem you have.... through the

years it seems like many diseases have starts from undetermined issues.

It is a step in learning to live with a disease to want to identify the

cause and " blame " . We all go through that. But as time passes, it

really becomes just part of you and although it is still interesting,

the cause of a disease becomes less interesting and living with it

becomes your main focus.

Also take care of your mental health. Any undiagnosed disease causes

great mental anguish and can initiate depression. Don't hesitate to ask

for help in that area. You have to be able to see the sky through the

clouds to make decisions.

Good luck.

Sandy