← Return to Referral to Mayo for Autoimmune or Unknown Condition

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@jenniferhunter

@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

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Replies to "@bryan_in_dallas You mentioned arthritis in your spine and hips. Has this been evaluated with imaging? The..."

Thank you for the detailed reply, but it’s all been checked. Like I said I’ve been to approx 20 doctors / specialists in Dallas. I’ve had MRIs and CT scenes of my brain, neck, lungs (incl mid back), lower back, tail bone sacroiliac joints. I’ve had xrays of a lot more, plus a spinal tap.

On a related note, I was very sick and diagnosed with JRA (systemic) in 1975, when I as 13. I’ve even gotten the old medical records fro University of Iowa and added them to my growing 3 inch thick folder of medical history.

On a side note, I’m a civil engineer…Vice President at an engineering firm…I read and research ferociously and I’m geared to analyzing and solving all sorts of problems. I asked tons of questions and, like I said I’m on my 6th rheumatologist (two of which have national credentials as being top in their field) and have seen 5 neurologist, plus pulmonary, vascular, cardio, and even a dermatologist who specializes in connective tissue / autos immune disorders. I’ve seen allergists, pain management doctors and on and on. Still none can determine why I hurt in every muscle of my body, every day, and have massive inflammation.

My Internist is married to a Rheumatologist, who is partners with one of those two nationally recognized rheumatologists that I mentioned. Everyone….EVERYONE…has run out of ideas. So Mayo was my last chance at trying to find a way to feel better. I’m 56 with high school aged kids and I now very painfully walk with a cane and can’t muster the strength or deal with the pain, after a long day of work, to even attend their baseball and volleyball games.

So Mayo thumps their huge chest claiming they take on the toughest of the tough cases…..which I truly lfeel I am. Yet, they took a pass. No interest….can’t help. Short email with do not reply. When I called their internal medicine group the nice young man told me they have more cases than capacity and blah, blah, blah. Sorry to sound bitter, but I am. I will also make it my passion to tell people what a crock of shit they are, when it gets to real difficult cases. This is un acceptable, and completely against EVERYTHING I’ve ever thought of the Mayo Clinic. Fuck ‘em. They’ve TOTALLY AND COMPLETELY LET ME DOWN.

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