Referral to Mayo for Autoimmune or Unknown Condition

Posted by kspiel @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.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

butterflylan17 | @butterflylan17 | May 3, 2019

In reply to @bryan_in_dallas "Wow, I just received a similar email. I’ve suffered from constant, chronic pain, from head to..." + (show)

@bryan_in_dallas

Wow, I just received a similar email. I’ve suffered from constant, chronic pain, from head to toe, for nearly 15 years now. It was manageable for the first several years, but has become very debilitating, over that past 10 years, I’ve been to probably seen 20 different doctors (including 6 rheumatologists and 5 neurologist) in Dallas and had many tests run. No one can diagnose why my inflammation markers are alway 4 to 5x the max for normal or why my muscles, head, eyes, etc, ache all day, every day. Though I know I have osteoarthritis in my spine and hips, that doesn’t explain the total body pain. I’ve also been told I “probably” or “maybe” have Fibromyalgia, but I don’t have the classic hot spots and that still doesn’t explain my inflammation.

My current rheumatologist just calls it an “undiagnosed autoimmune disorder.” I’ve tried all kinds of meds and, and still take several. I also now see a pain management doctor for strong pain meds, but even with that, my daily pain is never, ever, less than a 6.

Throughout this process, I’ve also nearly died from ARDS (with no identified cause) and been thru prostate cancer undergoing brachytherapy to kill my prostate/cancer. My rheumatologist would like to try a biological, but they are not recommended if you’ve had major infections and/or cancer in the past 5 years. Well, I’ve had both.

Along the way, I’ve had more than one doctor suggest going to Mayo, but I was concerned about the cost and available time to go up there. That said, I’ve always thought of Mayo as my last resort. Surely they could get to the bottom of why I feel terrible all the time.

So, with my wife’s encouragement, I finally called to set up an appointment. The young man I talked to in the new appointment department was very friendly and encouraging. Last Friday, we spent over an hour and a half going thru my medical history and new patient questionnaires. He said I’d definitely hear back by the following Friday (tomorrow) with all the details on my appointment.

Concerned that maybe I gave them too much information, I called the internal medical department, back on Monday, to tell them though I provided every medical issue, I’ve ever had in my 56 years, I wanted to make sure they know the only real reason I’m coming to Mayo is to try to diagnose why I feel terrible. The young lady there, was also very nice and assured me they were reviewing my file in detail and would get back with an appointment in a couple days. She also said she’d add notes to my file, from our conversation, and make certain the doctors got that message.

So late yesterday, I received a brief email (with a “do not reply” notice) telling me they’ve rejected my appointment request because they have determined they can’t do anything for me. WTH? I had no idea that was even a possibility. Never even occurred to me. Like I said, Mayo was my last real hope at ever feeling any better, for the rest of my life, and they’ve taken a pass. I’m both shocked, frustrated and considerable sad.

For what it’s worth, I grew up in northeast Iowa…a couple hours from Mayo in Rochester…and always thought they were the best of the best, smartest of the smartest and would help anyone if their medical conditions became too complicated for other doctors to figure out. Boy was I wrong. It bring tears to my eyes just writing this. Thanks Mayo, have a great life. BD

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@bryan_in_dallas

If u need an excellent neurosurgeon for an opinion, I have one of those also. Dr. Neckrysh at University of Illinois in Chicago. This surgeon is truly amazing and skilled beyond belief.

Ginger, Volunteer Mentor | @gingerw | May 4, 2019

In reply to @bryan_in_dallas "Actually, I appreciate your reply Colleen. I guess my biggest gripe is Mayo shouldhave told me..." + (show)

@bryan_in_dallas Definitely a tough spot to be in. I, too, read your posts. With your background of research and history, would you consider moving your focus to another medical facility? Not everyone here on Mayo Clinic Connect is a Mayo patient. Not knowing where may be your best fit, the ones that come to my mind are Baylor University Hospital, University of California San Francisco, Keck University of Southern California. It may be worth looking in to. Please know we do not take your situation lightly, and want the best for you.
Ginger

lioness | @lioness | May 4, 2019

@bryon-in-Dallas According to your handle I take it you live in Dallas . There are good university hospitals in the Dallas area plus Houston I too am sorry for the reaction you had at Mayo . I'm from Pa. and we had Cleveland Clinic, John Hopkins so like ginger said reach out to those university hospital.

Bryan_in_Dallas | @bryan_in_dallas | May 5, 2019

Thanks for the replies, but my posts were specifically about the Mayo Clinic. This site is called Connect.MayClinic. As I said, I’ve already seen multiple other specialists in Texas and sure I can keep doing that. My point is MAYO is where people go when the other doctors can’t figure it out. They promote themselves as the preeminent medical facility, with all the best doctors, for handing difficult medical conditions. I have a combination of difficult medical conditions, yet, they took a pass on me. I still find their decision both unbelievable and quite frustrating. I’m not interested in running all over the country to get 5th and 6th opinions. Again, thanks everybody, but no need to suggest other alternatives. Best regards. BD

lioness | @lioness | May 5, 2019

In reply to @bryan_in_dallas "Thanks for the replies, but my posts were specifically about the Mayo Clinic. This site is..." + (show)

@bryon-in-dallas Good luck to you

Bryan_in_Dallas | @bryan_in_dallas | May 5, 2019

Thank you ma’am.

butterflylan17 | @butterflylan17 | May 6, 2019

In reply to @bryan_in_dallas "Thanks for the replies, but my posts were specifically about the Mayo Clinic. This site is..." + (show)

@bryan_in_dallas , I just want you to know that I'm very empathetic to what you are going through.

My health insurance is actually through the Mayo healthcare system in Wisconsin and Rochester is an hour away from me. (Its actually closer than the facility I go to here…I'm in a very rural area).

My fiance who has had three cervical fusions, the most recent one in January, and in Chicago as an emergency for fear of becoming paralyzed because the ER at Mayo in Rochester sent him home. We were in Chicago over the holidays and he was admitted from the ER with surgery the next day. Everything turned out very well.

We are both originally from Chicago but have been in WI for two years. Don't get me wrong, We have both gotten some excellent care at Mayo. I have five or six specialists that I see who have been great. My main concern that I'm hoping to see a neurologist in Rochester for is this severe iron in my brain. But with knowing what my fiance went through, I'm keeping my options open to send my records to Johns Hopkins, Stanford, Oxford in London…

I do wish you the very best and will keep you in my prayers!

missybrett12922 | @missybrett12922 | May 19, 2019

I was a patient at Mayo Clinic many years ago. I have a patient number and card. I was denied an appointment recently for the same condition that I was originally seen for. I incorrectly thought that once you were seen at Mayo for a condition you were always a patient.

John, Volunteer Mentor | @johnbishop | May 19, 2019

In reply to @missybrett12922 "I was a patient at Mayo Clinic many years ago. I have a patient number and..." + (show)

Hi @missybrett12922, welcome to Connect. I know getting an appointment can be frustrating, probably more so since you already have a Mayo Clinic number and have been seen by them for the same condition. I encourage you to call the Office of Patient Experience at Mayo Clinic.
Office of Patient Experience
8 a.m. to 5 p.m., Monday–Friday
507-284-4988

bjf6416 | @bjf6416 | May 24, 2019

I was just denied also. Need to find out why I have macular degeneration at Singh a young age. I will have my doctor try next. Six years ago I had no problem getting an appointment….nor even three years ago when I went back. So disheartened.

sjevans14 | @sjevans14 | Nov 10, 2019

If you get a referral from a Doctor who graduated from the Mayo Clinic, you will immediately be accepted. This is what I did, when he called to refer me the people at the Mayo told him that and within a week, I had an appointment. I'd suggest you find a doctor who graduated from the Mayo, inform them of your intentions and take it from there.

fmgeorge | @fmgeorge | Nov 10, 2019

In reply to @fox940 "@kspiel You are not alone. I received an email on Monday and my referral was denied..." + (show)

It is best to have one of your medical specialist call to have physician consult. They should compile and forward lab results that are reflective of your most predominant symptoms as well as a comprehensive medical report, prior to their conversation with the appropriate doctor.

It took almost 4 1/2 years for me to be diagnosed with two extremely rare disorders. Although my case is “complicated” per the doctors, and I have a team of specialist, my neurologist contacted the Mayo Clinic; because my dominant symptoms were related to autonomic dysfunction. My diagnoses falls under the Neuro-Immunology sub-specialty. I think it would also have been appropriate for my Immunologist to contact them. My point is that I think it might help to focus on your main symptoms and think of the doctor who knows your journey the best and can tell your story from a medical perspective.

I hope this helps. I don’t know you but I am praying for all of you. I know what it is to suffer. Please remember that what we think, feel, and believe affects our health and becomes our reality. I believed I would find an answer and I now believe that I will be healed, despite being told the disorders are progressive and incurable. Doctors are perplexed at my current state, despite my having almost died, in April 2017. They are astounded that I am not bedridden, after going undiagnosed and untreated this long. Although everyday is a struggle, I have come a long way and believe I will get to the other side of this. I attribute my current condition to prayer and mediation, very clean eating, walking or movement of some kind 20 minutes at least 3-4 times per week, working through various childhood and adult trauma and restorative yoga.

Our bodies possess the capacity to heal itself, if we believe and begin to make changes that lead to health. Yes, it’s hard to think about doing anything when you feel so badly. But the human spirit is powerful! Food is medicine. So, perhaps start with eliminating processed foods, dairy, gluten, sugar, soy, oils except for avocado, coconut and olive oils. A plethora of research has concluded all these are inflammatory and bad if you have autoimmune disorders.

I also recommend the following books…if you haven’t already read them…from well-educated MD’s who have switched from traditional allopathic medicine to functional medicine, which looks for the why and not just the what of our conditions:

The Biology of Belief, Bruce Lipton

Mind Over Medicine, Lissa Rankin

Food: What the Heck Should I Eat, Mark Hyman

Sending Love and Light to you and praying that you not only find answers but you receive relief.

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