this post was submitted on 02 Jan 2024
14 points (88.9% liked)

Health - Resources and discussion for everything health-related

2303 readers
406 users here now

Health: physical and mental, individual and public.

Discussions, issues, resources, news, everything.

See the pinned post for a long list of other communities dedicated to health or specific diagnoses. The list is continuously updated.

Nothing here shall be taken as medical or any other kind of professional advice.

Commercial advertising is considered spam and not allowed. If you're not sure, contact mods to ask beforehand.

Linked videos without original description context by OP to initiate healthy, constructive discussions will be removed.

Regular rules of lemmy.world apply. Be civil.

founded 1 year ago
MODERATORS
 

I have a major undiagnosed medical issue. My main symptoms are dry heaving every morning- I'm a man, so no, it isn't morning sickness- and a total aversion to food. No nausea or pain, just I can't take the idea of eating or the smell of food. An eating disorder has been ruled out (I want to eat). The dry heaving has been happening for a year. I haven't eaten solid food since August with a similar 6-week bout last March. I live on Ensure and Gatorade. I have lost 70 pounds through this. I'm overweight (although only by about 10 pounds now), so I'm not starving to death, but I'm getting desperate.

I have had two EGDs, a CT scan, X-Rays, a head MRI, a HIDA scan, endless labs, and I got my gallbladder removed on the 21st. Nothing has worked. No one knows what's wrong with me.

So here's the issue now. I was scheduled to go to the Mayo Clinic on January 15th. When I called today to ask a question this morning, they said they had no record of my appointment and the soonest they could get me in was March 28th.

In the meanwhile, I have checked to see if the Cleveland Clinic and Barnes-Jewish in St. Louis will take me, but they haven't gotten back to me yet. Of course, they could have an even further out appointment. I'm in Indiana and I can only drive so far (maybe 10-12 hours). I really don't think it would be a good idea to fly in my condition, so that limits me to where I can go, but I really think I need one of the top clinics at this point because this can't go on.

Here's my longshot request for help: Does anyone here know how I can get into one of the highly-rated clinics below sooner than the end of March? Do you know someone on the inside that can do something? March 28th will be over 7 months of not eating. I won't die, but it's been hell both for me and for my family.

Supposedly highly-rated gastroenterology clinics in driving distance:

The Mayo Clinic, Rochester, MN.

The Cleveland Clinic

Barnes-Jewish Hospital, St. Louis, MO

Northwestern Medical Center, Chicago, IL

University of Chicago Medical Center, Chicago, IL

Rush University Medical Center, Chicago, IL

University of Michigan Health, Ann-Arbor, MI

Corewell Health William Beaumont University Hospital, Royal Oak, MI

UPMC Presbyterian Shadyside, Pittsburgh, PA (that's about my distance limit)

As far as I can tell from the confusing website, they all take my insurance.

Feel free to suggest others if you think you know a way to get me in.

Again, please no health advice or armchair diagnoses.

Thanks.

you are viewing a single comment's thread
view the rest of the comments
[โ€“] [email protected] 3 points 10 months ago (1 children)

Thank you. I am doing my best. Sorry to hear about your autoimmune condition. I hope you've found a solution.

[โ€“] [email protected] 3 points 10 months ago

The most acute brain shit responded beautifully to 9 months of high dose IV steroids, thank God. The rest of the shit, I have a patchwork of treatments that have improved my symptoms enough to keep me minimally functional, but not back to where I was before all this happened. (Tl;dr - in addition to autoimmune encephalitis, I jokingly call it hipster Long Covid. I got "Long Covid" before Covid was cool, aka ME/CFS)

Mayo is definitely one of the right places for you to go. Just keep hammering on it.