← Return to Autonomic nervous system disorder: No diagnosis or help yet

Discussion
Comment receiving replies
@joannemm30809

I'm so sorry for sounding so angry and frustrated but after 1.8 years of this and episodes happening every day now and no luck in sight with doctors finding out what's wrong etc I am just very very upset. And then to have BCBS deny much needed MRI's of the spine and head to rule in OR rule out if the spine or brain are the culprits etc is very upsetting.

Jump to this post


Replies to "I'm so sorry for sounding so angry and frustrated but after 1.8 years of this and..."

@joannemm30809 Oh my dear, please don't apologize. You have every right to be frustrated given your cirumstances.

Hello and welcome, I'm Rachel, and I've been through a very similar experience of thinking I was going crazy with my absurd symptoms that doctors could never quite pinpoint, with a few exceptions of legit diagnoses that came along such as small fiber neuropathy. Has your neurologist tested you via skin punch biopsy for small fiber neuropathy? You describe many familiar symptoms.

Through a lot of tests, meds, procedures, therapies, etc, etc... over 3 years, and being denied to be seen by Mayo Clinic, I was agitated. Mayo referred me back to my local doctors. Nope, not giving up! I researched my butt off and found that Mayo Clinic offers a pain rehab program taught by Dr. Sletten. I had first found his video presentation on Central Sensitization Syndrome (CSS) and my whole world opened up. It was a light bulb moment, brought me to uncontrolled tears because he spoke to me and described what I had been suffering from with failed explanation by any other Dr.

https://technolag.com/dr-sletten-discussing-central-sensitization-syndrome-css/

I've attached the CSS link for you to watch and hope, if nothing else, you'll be educated and know there may be help for you. I attended Jacksonville's Pain Rehabilitation Center (PRC) and I'm very excited to know you live nearby in case it makes sense for you.

Perhaps you still need to get to the bottom of things, but keep this in your back pocket should your health challenges not iron out.

Here is a link to the pain rehab center as well:

https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

I'm wishing you all the best as you continue to navigate your health challenges. Do you mind getting back to me with your thoughts on what I've shared?