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.
Get a referral from your primary care, book the first available appointment even if it’s 9 months away, and ask them to put you on their cancellation list. You have to be able to make yourself available with about 24 hours notice, but I’ve had this technique work for me in the past. You have to have a regular scheduled appointment that can be bumped up first though, for them to be able to have you on their cancellation list.
Thank you, I appreciate the advice. Unfortunately, I don’t see a practical way to get to any of those places with only 24 hours’ notice. I do have an appointment with Mayo, as I said. I just need something sooner if at all possible. I’m not losing a pound a day like I was for a while, but I’m going down maybe 10 pounds every 2-3 weeks. I’ll survive until March 28th, but I really hate living like this. The gallbladder removal was sort of a last hope.
Call and tell them that, they will most likely put you on a list that will move you up in the event of any cancellation (very likely)
Sorry, I don’t understand. Tell them what? I can find out about the cancellation list, but someone else suggested that requires me to be there within 24 hours and that’s not possible.
Get on the cancellation list anyway; just tell them you need more than 24 hours notice. Call them and explain that your symptoms are causing severe weight loss and see what they can do for you.The big facilities are very willing to work with people who come in from a distance.
My family all receive our care at Cleveland Clinic, which is 4 hours from my mom’s house and 6 hours from my sister. They’ve worked with us a lot. They’ve squeezed us in before. I’m sure Mayo is used to dealing with the same kind of situations.
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.