Anyone here gone to the Mayo or Cleveland Clinic

Hello, I just discovered this site and am so glad to have found a place I can get feedback from fellow sufferers. I would be grateful for any suggestions as I'm having to seek second opinion due to my local doctors being stumped and suggesting I get a comprehensive diagnosis. I'm very stressed out about what I should do as I've been getting progressively worse over the last couple of months.

I have had RA since I was a teenager, but it was not properly diagnosed or treated for many years. I also developed severe gastritis, migraines, asthma, endometriosis, and other auto-immune diseases by the time I went to college. I've been given so many NSAIDs, DMARDs, pain killers, etc over the last few decades that it's really ripped up my stomach. The Celebrex and Sulfasalazine seem to not do much but be maintenance mode drugs for the last several years.

The MTX really caused the most damage over the last year to my stomach, and since I saw no benefits from continually upping the dose over a year, my Rheumatologist switched over to biologics. I was put on Enbrel, but didn't see any benefits in the 5 weeks I was on it.

It was stopped by a surgeon since my gallbladder started to malfunction (HIDA scan showed 8% rate, but no gallstones). I also have had an intense flare up of stomach pain and gastritis with a lot of reflux, despite being on PPI (nexium) for the last 14 years and being put on Sucralfate this past month (it's an ulcer medication that coats the stomach, although my upper endoscopy didn't show any ulcers, just a severely inflamed stomach).

I can't eat anything without pain and bloating, and feeling like something is stuck in my throat. The gallbladder attacks are quite painful, but I am resisting having it taken out as I have read that it will exacerbate the gastritis. That's probably why the surgeon wasn't too keen to take it out; he's also not convinced that there isn't a lot more going on.

Now I have pain in the throat as gastritis is apparently creeping up and having Globus Sensation. My RA is painful enough, but these abdominal and other pains are just overwhelming.

I have thus been advised by my GP to seek out comprehensive treatment where a team of doctors work together for diagnosis and treatment protocol. Since I have so many chronic illnesses, this makes most sense. We're not entirely sure that there isn't more going on that no one here is getting hold of.

My options are Cleveland clinic or Mayo clinic. Cleveland clinic is about 4-5 hours drive away (I'm in upstate NY), but Mayo clinic would require flying to/from (and thus likely be more expensive). I would be grateful for any insights from anyone's experience at either place. Also, any names of specific doctors would be very helpful.
Thanks very much!

Hi Global, I have made some paragraphs in your post to make it easier to read. Some of our members have tracking problems when reading. Thanks.

Post Edited By Moderator (straydog) : 8/22/2014 6:28:19 PM (GMT-6)

I, too, have had JRA since grade school. I'm 38 now and have a TON of autoimmune issues and have spent more time in the hospital then out. Right now my lungs and GI tract are under attack. I have O2 and I'm currently on TPN. I totally get what it's like to be a difficult/complex patient.

I travel 3hrs south to Duke. My Drs here referred me down there when things started getting complicated. The big research hospitals/clinics are like a whole different world compared to local clinics. I go to Duke monthly and often have 3 or 4 appointments lined up. Big research centers are where therapies are developed and tested.

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Single mom to my little man (10yrs old)
37yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, NJ tube

Global, you might want to do a post over in the crohns forum just asking for opinions about the Cleveland Clinic. A few years back there was some members that went there, their experiences were all positive but a lot can happen in a few years at any of these places.

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Susie
Moderator Chronic Pain & Psoriasis Forums

Thanks both! I will post this to the other forum, and hopefully someone will have some insights to share.

Thanks White Beard! It's good to get some personal experience feedback. Everything I hear is so second-hand and possibly hearsay. This is the first 'not glorious' review of the Mayo clinic I have come across, since there is so much positive stuff (possibly partially myth), so thank you for the candid response. I suppose going to any place with huge hopes is a bad idea. So it's very good to have more down-to-earth experience-based feedback. Thanks so much!
I used to live in Minneapolis a long time back, so I know how brutal the winters can get. I don't miss that. Perhaps if any doctors back then had sent me to Mayo down the road, I wouldn't be in this situation a decade later, far worse than I have ever been (and I've been sick my entire life).
I hope someone with info about Cleveland clinic might write back, as it is most likely I will end up going there just due to proximity and overall cost factors.
Thanks again!

Wherever you go, make sure you get authorizations for all tests before you waste time when you get there. Insurance companies started just this year taking a week or more to " preauthorize" (approve) any testing or procedures.