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Autonomic Dysfunction + POTS + LUPUS + Tachycardia = Rejection Letter
Autoimmune Diseases | Last Active: Feb 20 2:52pm | Replies (12)Comment receiving replies
I lost my job because I could not get into a Neurologist in Michigan. After many months. I called Mayo
I was not sure what the issue was so I ask to see an internest, best thing ever. I got a appointment in 6 weeks. I had alot of thing going through my body. I had been sent to 7 different doctors. All of them gave prescriptions that made things worse. We spent almost 2 weeks. The first thing I was way over medicated. They sent me to several doctors from head to toe. I was diagnosed with Celiac, Migraines, Fibromyalgia and Auto I immune disease. Set me home with a plan.
Come to it my mother was diagnosed at Mayo 1966. She had Migraines, Lupus, Kidney and Lung disease. I never knew what she had. I did know she was going to have a Kidney Transplant but died before it was none. She died of Congestive heart failure at 50ys old. I would walk crushed glass to get to Mayo in Rochester.
I do I completely trusted everyone there.
Replies to "I lost my job because I could not get into a Neurologist in Michigan. After many..."
Thank you. I am so upset with our health care. We need to advocate for your self and loved ones.
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I’ve heard varying stories like this. I’m glad you were able to get into Mayo, but it seems a mystery as to how this happens and who has a positive experience. I have similar conditions to you (fibromyalgia, central sensitivity syndrome, an autoimmune arthritis, POTS, and more) and while I was seen once, I was completely misdiagnoses at Rochester. And as things progressed, multiple appointment requests or requests for follow-up were denied. Last year, I saw an internist at the Jacksonville campus, but the communication and coordination of care has been horrible and it hasn’t resulted in treatment options because the specialist orders I’ve received aren’t being honored—their own clinics are declining to see me.
It feels like night and day when I hear about people like you who’ve had life-changing experiences at Mayo and then think about what happened to me or some of the others who’ve commented who also were denied appointments. I don’t know what to make of it.
I wish that we all could have the kind of experience