← Return to Referral to Mayo for Autoimmune or Unknown Condition

Discussion
Comment receiving replies
@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

Jump to this post


Replies to "Wow, I just received a similar email. I’ve suffered from constant, chronic pain, from head to..."

Hello @bryan_in_dallas, welcome to Connect. I'm really sorry to hear about your being denied a Mayo Appointment. Is there a chance you can possibly have a doctor give you a referral to Mayo Clinic to see if they are able to get an appointment for you? @colleenyoung our Connect director has provided some information that may be helpful when your appointment has been denied in another post here:
https://connect.mayoclinic.org/discussion/referral-to-mayo-declined/?pg=1#comment-83055
Please don't give up!

@bryan_in_dallas You mentioned arthritis in your spine and hips. Has this been evaluated with imaging? The reason I asked is because a spine problem that causes stenosis in the central canal can produce pain anywhere and all over the body below the level of damage. It would be easy for that cause to be missed. Have you had an injury like a whiplash? I am a Mayo spine surgery patient and I did have pain everywhere caused by spinal cord compression in my neck and the connection was missed by 5 surgeons before I came to Mayo. Also the respiratory distress you had without a known cause could have a link to a spine problem if there is some entrapment of the nerves that service your lungs. They emerge from the spine in the neck and travel through the chest to the lungs. Arthritis can also effect the spaces where the nerves exit the spine that are specific to those nerves. Spinal cord compression can affect everything and can be hard to trace which of the axons passing through that huge bundle are affected. Those would be physical issues. Possibly there could be more than one cause for your symptoms. There are inflammatory spine issues too like Ankylosing Spondylitis that cause overgrowth of bone in the spine. I know a patient who has this and in addition to spine surgeries, she sees a rheumatologist to try to prevent the effects that are causing the bone overgrowth. It is an inflammatory problem. Sometimes it takes years to connect our symptom history to a cause. Don't give up. The AS diagnosis does get missed a lot by doctors. I don't have it. My stenosis was caused by an injury. If you can work with your doctors to try to narrow it down a bit, it might lead you to a specialist type of interest where you could try to get another evaluation by contacting that specialty. Look up what your medical records say and terms and see if you get any hits on medical literature with similar cases. I did that, and found cases like mine that explained why the real diagnosis had been missed. I sent the medical literature I found in with my request and got an appointment with a neurosurgeon and I got the help I needed. https://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/symptoms-causes/syc-20354808

@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.

  Request Appointment