← Return to Referral to Mayo for Autoimmune or Unknown Condition

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@kellye5

This is so disheartening. My 23 yr old son is very ill and recently diagnosed with a very rare illness…collagenous gastritis. I am now hesitant to try to get him into Mayo. Peace and love to you and your wife. I can relate as I have fibromyalgia for which I choose not to medicate for…it is horrid.

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Replies to "This is so disheartening. My 23 yr old son is very ill and recently diagnosed with..."

@kellye5 and @kspiel Let me give you a piece of advice: Do Not Give Up! I have been fighting for help for 60 years. I even got, finally, an appointment at Mayo-AZ. When I got there, They checked me for everything else, and totally ignored my issues for almost 4 months. I know now I should have gone to one of the other top clinics in North America.. Stanford, Brigham and Women’s, Sloan Kettering, Fred Hutchinson, U of Utah, City of Hope. Again, read my story at https://bit.Ly/1w7j4j8 I could even go to Mayo again, but it is only because I know a lot more about my disorders than I did 4 years ago. So do your own studying, and ask a million questions.

How do you know that they ignored your issues ? You are not a doctor. Mayo is one of the best in the country if not the best.

I agree, I think we each know our own bodies and I don’t think many Physicians take the time or interest in us getting well. I have experimented w prednisone and tramadol and am finding what works best for me. I think by getting lab work every 90 days does help me identify what’s going on w my PMR. I do think I have developed some arthritis along w this mystery illness.
I agree, we just keep looking for someone that will take interest in us. I am seeing another rheumatologist in January just to see if he tells me the same things my rheumatoid Dr tells me to see if they are in agreement.

I urge you to go to Mayo in Minnesota. Your son will be thoroughly checked and checked out only for his current problems but Mayo will give him a complete physical. Mayo’s recommendations may be very different from the ones he now has. If anyone can help him, it would be Mayo. Best to you and you and your son.

@drtapasgoswami “You ask How do you know that they ignored your issues ?” Simple.. If they did not deal in any way with what they found, or did not communicate with me some how about it, They were ignoring their advertised hippocritical oath, and should be dismissed from the program. I did not spend $15,000 just to be told “If you were actually sick with Amyloidosis you would be dead by now. We have seen nothing that says you are dead.” I asked for a hematologist, and saw about 20-30 other med personnel before I say a hematologist. I even had an MRI done on my heart which said “Left ventricle enlarged, but we assume cardiomyopathy, which can be safely ignored.” Yes, they did ignore everything almost they saw, including an enlarged liver, spleen, lungs, heart, thyroid,cerebellum, lymph nodes, prostate, bladder, kidneys, pancreas, misfolded protein, cornea disfunction, purpura on eyelids, fingers and toes, rheumatoid and psoriatic arthritis, chronic anemia, enlarged tongue, macular skin on arms, larynx, internal organ walls, Mayo has the prettiest building columns in the world, but seems to be a second rate clinic.

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