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kspiel
@kspiel

Posts: 6
Joined: Mar 27, 2017

Referral to Mayo declined

Posted by @kspiel, Dec 12, 2017

I’ve posted in this thread a few times, as my wife has been very and increasingly ill for 12 years. Her disease is debilitating, and like many of you in this group, she’s been labelled an attention seeker, a chronic complainer, etc., etc., etc. I am not certain that her illness is autoimmune, but I suspect it very strongly. Her symptoms are widespread (intestinal, epidermal, muscular/skeletal, and on and on). Recently, her family doctor in Canada, where we live, made a referral to Mayo which was highly detailed, chronicling her complicated medical history, progression of symptoms, and the day to day grim reality of this progressively treacherous disease. To our utter shock and disappointment, we received word today that the referral had passed through internal medicine, down to gastroenterology, and was, with regret, not accepted. According to the letter, they felt there was nothing to be done. I can’t say how disheartening this news is. A young and vibrant person that I love is ill and suffering desperately.

Our doctor has promised to write a strident letter of appeal. I called the international appointments office today, and the representative I spoke with said that she would be sure to resubmit our application, and advised that we wait until the doctor’s appeal is received also, so that that can be reviewed along with the referral. I am anxious to hear if anyone has a similar experience of at first being denied an appointment, and through contestation eventually received one. I fear that our window of opportunity to receive meaningful treatment is shrinking.

REPLY

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.

@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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@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.

@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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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.

@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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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.

@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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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.

at age 80 i read your posts and realize that during my many years i have also experienced many of the same (and more) symptoms. they continue even now. somehow i keep going because i have hope. i cater to myself when i can. somehow we must be strong because there are so many ways to enjoy life. even with the suffering. yes, even when i am in a “boot” on a leg and must run to the toilet because the chronic digestive system starts acting up. but i look at it like this: great at least one of my pains will be alleviated (until the next time). over and again this goes on in many ways, such as losing my eye sight. but then again, there is always the boob tube, music, talking to a friend. even just petting a dog or cat and caring for them is satisfying. perhaps i should not be posting this for i do not want to take away from the pains that are so hurtful and harmful to us all. but i am still glad to be alive and enjoying the seasons music and standing up with my boot on and trying to dance to the beat of the music. (at least i am up and ready to run to the toilet. ha ha. laughter is good for the diaphram. love to all. peach

@peach414144 Thanks, Peach, for the great note. Some days all I can do is sit and watch the ocean about 300 feet away. Sometimes I see a whale spout, or sea lions playing, or just waves breaking. We take the good stuff where we can find it.

@oldkarl

@peach414144 Thanks, Peach, for the great note. Some days all I can do is sit and watch the ocean about 300 feet away. Sometimes I see a whale spout, or sea lions playing, or just waves breaking. We take the good stuff where we can find it.

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@oldkarl, Thank you for this beautiful image. In the midst of your complications, you have found beauty and some peace.
Rosemary

@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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@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.

@kspiel You are not alone. I received an email on Monday and my referral was denied as well. I called yesterday morning and couldn’t be given a satisfactory answer on why I was denied appointment. I understand that Mayo sees millions of people a year and helps many people, but they certainly didn’t even attempt to help me. It has left a bad taste in my mouth as all I am trying to do is seek answers for the diagnosis I have been given of Chronic Pain Syndrome. No one can help me and it is disheartening, I can only help myself. When you go to Mayo’s website the Request an Appointment link is hard to miss and it is even on this site of “Request Appointment.” Underneath Request Appointment it needs to read “Maybe You’ll Get One'”

@kspiel and others… One of the first great problems is to find out whether we have any evidence of autoimmune disease. There are several tests which should be run on you or the patient before getting too far into the problems. Let me name just a few. Major clinics know a lot more. !. ANA == Is there an autoimmune disease in this body? 2. SERUM FreeLiteChain(C) for excess misfolded protein in blood serum. 3. 24-hour urine assays for protein or blood in the urine, or bacteria. 4. AlnylamAct.com for DNA showing openness to certain autoimmune diseases such as hATTRwt, Multiple Myeloma, ACystatin, Gelsolin, etc. 5. MRI of brain, heart, lungs, kidneys, etc, looking for various deposits or mis-shaped tissues. 6. EMG on sensori-control nerves for cardiac, pulmonary, hands, feet, etc. 7. Look for anything that seems unusual, such as blackened toes or eyelids, wavy focus of the eyes, double vision of either eye independently, blackened bands around the lower legs, bones broken from non-expected reasons. I broke my pinky-toe by putting on my socks. Finger or toe nail sections growing side by side at different rates. Well, there are lots of things like this, but you just keep studying, especially if you have a doctor who will try to help you sort it out. Some will, some won’t.

Welcome to Connect, @kellye5
I’d like to invite you to a very active discussion happening about collagenous gastritis in the Digestive Health group.
– Collagenous Gastritis https://connect.mayoclinic.org/discussion/collagenous-gastritis/

While your son’s condition is rare, he is not alone. And neither are you — a mother who cares. I hope you’ll both join us in the discussion on CG.

@peach414144

at age 80 i read your posts and realize that during my many years i have also experienced many of the same (and more) symptoms. they continue even now. somehow i keep going because i have hope. i cater to myself when i can. somehow we must be strong because there are so many ways to enjoy life. even with the suffering. yes, even when i am in a “boot” on a leg and must run to the toilet because the chronic digestive system starts acting up. but i look at it like this: great at least one of my pains will be alleviated (until the next time). over and again this goes on in many ways, such as losing my eye sight. but then again, there is always the boob tube, music, talking to a friend. even just petting a dog or cat and caring for them is satisfying. perhaps i should not be posting this for i do not want to take away from the pains that are so hurtful and harmful to us all. but i am still glad to be alive and enjoying the seasons music and standing up with my boot on and trying to dance to the beat of the music. (at least i am up and ready to run to the toilet. ha ha. laughter is good for the diaphram. love to all. peach

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@i should have added this to my post. i have had these many illnesses for my entire life. perhaps because of this i can accept the many pains. i have learned patience because of the many, many years involved. but there are really times that i cry and must remain stationary and pray for the pains to stop. but for now it is good. enjoy and imagine the good.

Hi @kspiel
How disheartening and frustrating to not get an appointment at Mayo Clinic. @fox940 recently also had a referral declined. It sounds like both of you have taken the appropriate steps to seek care at Mayo Clinic. When our experts review your records and medical history, they also closely consider the care that you are currently receiving. If we do not feel we can offer care that is different from what you’re already receiving, we do not want you to incur unnecessarily expense and travel.

That being said, it sounds like your physician(s) believe Mayo Clinic may have more to offer. Thus a physician appeal is a good idea. When making appointments for suspected autoimmune diseases, your PCP should contact the division specific to the organ involved or area where there is most concentration of discomfort rather than applying to General Internal Medicine.

Autoimmune disease is an umbrella term for so many illnesses, often with no clear cause or definite road to treatment. Please keep asking questions, and seeking information. As OldKarl said and I agree: Don’t Give Up.

@fox940 and @kspiel, I like Colleen’s (@colleenyoung) suggestion. I think it may be worth discussing with your doctor to see if they will call Mayo Clinic and get a referral appointment for you in the division that makes the best sense for you. And like the others have said – Please Do Not Give Up!

John

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