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Help with understanding test results
Autoimmune Diseases | Last Active: Jun 29, 2024 | Replies (79)Comment receiving replies
I am so happy that some have been able to get the help they need. Florida here as well. No help for me either. I’m 58 and I’ve been very ill for over 22 months and getting more ill as each day passes. My PCP on our monthly visits still asks, “ how’d it go with the infectious disease doctor”? My reply is, every visit, I haven’t seen one?
I’ve been waiting to see a infectious disease doctor for 16 months. My PCP was helpful in the first few months but since, I’ve been on my own. There is just no help. And because of this long wait, I have pretty much been home bound and now have 5 very serious conditions. It’s very scary. I had a history of good health up until 22 months ago, I cannot get into the Mayo Clinic until I get a referral from a infectious disease Doctor. It’s so hard knowing ,waiting, watching, as each day passes and no help.
Replies to "I am so happy that some have been able to get the help they need. Florida..."
where in florida are you!
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Hello @grace26 and Welcome to Mayo Clinic Connect! We’re glad that you are here. That’s terrible about not being able to see an infectious disease doctor for 16 months! Unbelievable! I’ll give you the same advice that I gave to @rebaba. You need to find a comprehensive medical center or university hospital. They are much better at seeing patients rapidly and figuring out what’s wrong. Or, try calling one of the organizations:
GARD Genetic and Rare Diseases organizations. https://rarediseases.info.nih.gov/
NORD. North American Organization for RareDiseases https://rarediseases.org/
They keep lists of rheumatologists who specialize in rare diseases.
As for a referral, your PCP should be able to help you get in to Mayo! They can get all of your medical chart together and mail it in, especially if you’re home bound and have 5 conditions.
Does this sound reasonable to you? Can you possibly call your PCP tomorrow and set up an appointment to talk about this? I know it’s a lot, but we have to get you some help! Will you let me know what happens?