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Unknown autoimmune/neurological disorder
Autoimmune Diseases | Last Active: Mar 10, 2020 | Replies (14)Comment receiving replies
John,
Thanks for reaching out and your article is interesting. Yes, we have mentioned to Emory about going to Mayo clinic but until they inform our insurance company that there is nothing more they can do, the insurance co will not pay for us to go. We have 2 appts with Emory over the next couple of months and we plan on pushing them basically to step up or move out of the way. The only time she gets immediate attention is when she is in ICU, but once she is discharged, she just becomes an number and the attention we get at the neuro-clinics is test for this and see you in 4-6 months. She is emotionally and mentally drained on top of the main physical issues and just looking for guidance.
Replies to "John, Thanks for reaching out and your article is interesting. Yes, we have mentioned to Emory..."
This may seem a little wacky, but my sister, who also has an autoimmune disease sent this article to me today. https://ancavasculitisnews.com/2020/03/03/elsevier-opens-books-articles-to-rare-disease-researchers-starting-rare-disease-day/. Basically, it says “statistics indicate that about 95% of rare disorders, which impact about 300 million globally, have no approved treatment. For many of theses diseases, diagnosis alone, can be challenging. In addition, many patients find it difficult to access information about their disorder and quality of healthcare.” Researchers may have learned about these diseases, but it hasn’t filtered down to your average doctor.
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Kyle @lquillen1963, I did a search on Connect and found a discussion with a member who has similar symptoms after inhaling gasoline engine fumes. It might be helpful to join in that discussion to see if anything stands out that might be helpful.
> Groups > Just Want to Talk > Asthma like symptoms after engine fume inhalation
-- https://connect.mayoclinic.org/discussion/asthma/
Are you able to talk to the Insurance company based on your wife's condition and current providers not being able to diagnose the issue? I'm guessing you have already pushed the doctors but maybe you can put more pressure on them.