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.
Ok, sounds good. Thanks.
As far as the Cleveland Clinic, I tried to apply online to it earlier and they turned me down but said I could call them and appeal my case. I don’t know how much stamina I have to do that today, but I will see about doing it tomorrow.
Yeah I’m sorry you’re going through all this. Believe me, I know all too well that feeling of insecurity when you’re in healthcare facility limbo. Ration your strength, but keep pushing on them. These obstacles can be cleared.
And I was literally insane back when I was playing this game trying to get seen at Mass General autoimmune neurology. (Psychosis from an autoimmune brain condition.)
You can get through this.
Thank you. I am doing my best. Sorry to hear about your autoimmune condition. I hope you’ve found a solution.
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.