Hi @burt, it sounds like you have been through the wringer with the tests. I know that must be frustrating having all that done and each time hoping they find the answer. Have you been tested for Postural Orthostatic Tachycardia Syndrome (POTS)? I only thought of it because of some of the symptoms you mentioned are symptoms for POTS. I've also read that POTS is often misdiagnosed.

Mayo Clinic Q and A: All about POTS — postural tachycardia syndrome
-- https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-all-about-pots-postural-tachycardia-syndrome/

What Is POTS and Why Haven't More People Heard of It?
The condition, often misdiagnosed as anxiety, can be debilitating and demoralizing.
-- https://health.usnews.com/health-news/patient-advice/articles/2016-08-01/what-is-pots-and-why-havent-more-people-heard-of-it

Do you have an appointment scheduled with the new team you were referred to by your neurologist? I hope they are able to find an answer for you soon Will you let us know what you find out?

One of the tools I use when I'm researching my health issues and I'm not able to find a lot of information is Google Scholar (https://scholar.google.com/). You can find a lot of research information and you can also sort if by date to see the latest articles.

John

Jump to this post