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Autoimmune? Undiagnosed and don’t know where to go next
Autoimmune Diseases | Last Active: Apr 15, 2020 | Replies (158)Comment receiving replies
@heatherdoney74 Welcome to Connect, an online support and information community. People can share their symptoms and hopefully get answers from others experiencing the same problems. We’re not physicians, but we try to share what has worked or not worked. Have you thought of going to a large medical center or university hospital/medical school? With all of these new diseases popping up, local doctors don’t seem to have the most recent knowledge. The local doctors in my town didn’t know what was going on with me, until they finally agreed to an MRI. Once the neurologist saw the MRI, he knew to give me intravenous steroids, but didn’t really know what else to do. My husband was able to get an appointment at the university medical center and I’ve been under their care since. Since breathing seems to be your biggest issue, you might want to see a pulmonologist at a medical center. Can you ask your doctor to refer you and send your medical records? Let me know what happens, please. I care. Becky
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Thank you Becky. I am gathering all my now. None of the teaching med centers take my insurance, but I'm at the point now of doing whatever it takes to get somewhere that can help me. I have a pulmonologist who keeps changing his mind of what he thinks it is. He thought Tietzes syndrome, put me on steroids, then stopped mid week and told me to take medium for 6 weeks, wanted to check my chest wall and look for clots? Then maybe not. I have no clue what they are doing. Everyday something different. Here, if you tell the doctor's you want to go to somewhere like a Mayo clinic, they get really upset, so I am just gathering my scans and records and am going to try to get in to mayo or see if this is lyme and try a lyme specialty place. I have an mri tomorrow of my abdomen, so hoping if there is something around my lungs, they might see it. I have no idea what else to do and am exhausted just remembering what I have to do each day. Thank you for caring, I really do appreciate it. It's nice to know that someone out there does and this forum has given me a little hope and renewed my faith.