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Undiagnosed Autoimmune Disease - No one will listen to me
Autoimmune Diseases | Last Active: 6 days ago | Replies (213)Comment receiving replies
You have had a lot of tests! After two yrs my docs are not sure which auto immune disease I have. I have. Done 5 months of infusion with OCTAGAM. No help. I. Can no no longer walk, my sleep is poor. I’m on prednisone but problems have started there. I am now seeing a Neurologist I’m sure he will lower my dose. I have been advised to go to a University that does research into my problem. We have a Mayo clinic in JAX but it is a horrible drive. I have been to Uof Florida. Any ideas from anyone? Bev
Replies to "You have had a lot of tests! After two yrs my docs are not sure which..."
@beavermeadow82 My second suggestion is that you check out Mayo’s system of hospitals.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
These hospitals and care centers are all around the U,S. You can probably find one a short distance from you. You could also ask if they know of a Mayo-trained doctor in Xcity.
Let me know how it all works out for you!
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@beavermeadow82 Welcome to Mayo Clinic Connect! Gee, you’ve seen everyone! Ask your PCP for a referral to a rheumatologist at U. Of Florida. Have you seen one yet? They are the specialists in autoimmune diseases and should really be able to help you. Do you have someone who can go with/drive you to MayoJAX?
Ask your 2 doctors if they will refer you to THE best doctor in your part of Florida. They should be able to do that! I’ll keep my fingers crossed for you!
I have 1 more suggestion but I’ll save it for tomorrow.