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@frawlsco You sure sound like you’re having a difficult time getting help. I understand that Mayo Clinic wants you to see someone in internal medicine first. That is because that is how insurance works. Everyone starts with their PCP or internal medicine for a basic workup. They can then be referred to a specialist (rheumatologist). I entered a link that you may find helpful. It’s from the National Institutes of Health.
https://rarediseases.info.nih.gov/guides/pages/25/how-to-find-a-disease-specialist
They may even have a phone number you could try. I have another resource, that i will find, that may also be of help.
Will you try this and let me know what you’ve learned?
Replies to "@frawlsco You sure sound like you’re having a difficult time getting help. I understand that Mayo..."
thank you for responding. I will let you know what happens . I plan on setting up the appointment after the new year. I guess I see them first and then they request all the doctors files? I just hope it may be one problem which just hasn't been treated correctly. I don't know.
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The Autoimmune Association just held their 1st summit to discuss all the issues surrounding autoimmune diseases.
You can look up Autoimmune Association on YouTube and a flyer for the summit should come up. Just to the right of the flyer is a list of topics you can listen to. One which might interest you is “Path to a Rare Disease Diagnosis.”
Let me know what you think!