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Nov 24, 2019 · Referral to Mayo declined for Autoimmune or Unknown Condition in Autoimmune Diseases

I am sorry that you got denied an appointment. This past Friday, I too was denied an appointment because my case was too complex and they didn't have the appropriate specialist's on staff. I do not have an official diagnosis,. I was just asking for an appointment to get a diagnosis, so how they knew they didn't have the appropriate doctor is beyond me. Plus, I too thought we were supposed to go to Mayo when our doctors didn't know what else to do. It looks like we need to find a new miracle hospital to help us. You will be in my prayers! Hopefully there is some measure of comfort knowing that you are not alone.

Nov 13, 2019 · Autoimmune? Undiagnosed and don’t know where to go next in Autoimmune Diseases

Thank you for your words of encouragement and empathy. I am going to tackle one day at a time. Today it was a minute at a time getting to and during an MRI, then 5 minutes, an hour, until it got better. I know better days will come. I will keep researching. I found a company that does an extensive lyme test, dna connexions, expensive, but the most reputable this far in my search. I am feeling my way along, thank you for making my day a little brighter and hopeful. Blessings right back to you! Hope you have a restful evening.

Nov 12, 2019 · Autoimmune? Undiagnosed and don’t know where to go next in Autoimmune Diseases

Thanks Teresa,
I did reply below to Becky, not sure how these posts work if you can see them all or not. I have an mri tomorrow and am collecting all my records to go somewhere like that. It's just time consuming and exhausting. I haven't been able to drive since june 22nd, so my daughter has to run me around getting everything and it is extremely difficult for me to ride in a car, nausea, major pain, horrible, so all is just taking some time. I appreciate the response and am grateful for this forum and all of you.

Nov 12, 2019 · Autoimmune? Undiagnosed and don’t know where to go next in Autoimmune Diseases

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.

Nov 12, 2019 · Autoimmune? Undiagnosed and don’t know where to go next in Autoimmune Diseases

Hi John,
Thank you for the reply. I have talked with mayo and other teaching hospitals. None take my insurance so I am trying to apply for financial assistance and I am gathering all of my radiology reports. Mayo did say that if it is lyme, I would have to go to MN. I live in Florida and traveling 1 mile in a car is difficult at this point. I have ordered an extensive lyme test from DNA connexions, so I am hoping forndirectuon after that. I am only 45 so this is just crazy to me that I am almost incapacitated. Anything you think might help, I will do. Thanks for sharing!

Nov 12, 2019 · Autoimmune? Undiagnosed and don’t know where to go next in Autoimmune Diseases

Wow, you have alot going on. I have felt that there is more than one thing. It helps that someone knows what this feels like. I have folders of the appointments, but I will turn it into a binder. I am trying to get through a few more tests before i go to Mayo because once i go there, i have to pay cash, which i haven't been able to work in 4 months and I'm a single parent, so trying to get as much done through insurance as possible. All of my vitamins are good, most all bloodwork is fine, high cholesterol and sometimes one or two markers of liver or kidney will be low or high, but doctors say not to worry. I have found a holistic doctor with a MD background as well, so i am hoping he can help. Not being able to breathe is the scariest, more than the pain. Thank you for responding and your prayers and I will also be praying for your continued recovery and improvement. I'm trying to take it one day at a time.

Nov 12, 2019 · Autoimmune? Undiagnosed and don’t know where to go next in Autoimmune Diseases

Hi Shelly, sorry to bother you, quick question. Did your heart rate ever jump around between the 40s and 150s when you would try to get up or move? I get very dizzy and my HR goes nuts whenever I try to change a position. Just wondering, with that and the chest burning and right arm numbness I can never decide whether to go to ER since it seems to happen daily for the last week.