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Pending Sjogren's Diagnosis and Doctor Worries

Autoimmune Diseases | Last Active: Jul 21, 2023 | Replies (18)
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@michey

Autowren, I am reading posts to learn more about autoimmune problems for my husband who remains undiagnosed despite seeing a number of specialists and read your post. At the same time, I was listening to NPR and heard this discussion that you may possibly find helpful:
https://wamu.org/story/23/07/17/in-good-health-the-complexities-of-autoimmune-disease/
(Just click on LISTEN to hear the 34 minute podcast that may be well worth your time.)
The following 3 speakers talk about the difficulty in getting diagnosed and treated. They address BLACK WOMEN specifically.
Dr. Mehret Burri Talabi from The University of Pittsburgh School of Medicine
Joy Buie, Director of Research at the Lupus Foundation of America Joy Buie
Dr. Lilyana Amezcua, the Multiple Sclerosis Comprehensive Care and Research Group's interim chief
Thank you for sharing your plight. I'll look for your updates in the future.

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Replies to "Autowren, I am reading posts to learn more about autoimmune problems for my husband who remains..."
Becky, Volunteer Mentor | @becsbuddy | Jul 21, 2023

@michey. Thank you for the NPR discussion. It will be a great addition to these many discussions on trying to get diagnosed.
What doctors has your husband seen? Has he gone to a university medical center? Before I was diagnosed, I was just told that I must be dehydrated and not to worry. When I finally got the MRI I had been asking for, none of the doctors recognized the problem. The hospital sent the films to the university hospital and they knew exactly what was wrong. I got some emergency treatment and then my husband took me to the university. Thank heavens for the university and doctor!!
Have you considered a university hospital or comprehensive medical center?

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