Dramatic small sensory nerve loss -EDS/autoimmune cause? Need ATLrheum

I am 50 year old active female with a healthy lifestyle who was diagnosed with Small Fiber Polyneuropathy with gradually increasing neuropathic symptoms since 2012. Significant degeneration of small fiber nerves was confirmed with biopsy 2020. I did have a Rheumatological work up in 2020, and was diagnosed with nothing other than hypermobility, but I hear/see that it is common for immunological issues to be overlooked.

I recently experienced what seems to be catastrophic nerve death in right foot in Nov, and in both hands one month ago. After literally 8 hours of paresthesia in right foot, and two nights of burning sensations in my arms, I am suddenly left with less than 50% sensation in my fingers and distal right toes and foot.

What’s the cause? I have ALL the markers for Ehlers-Danlos, but cannot find much information about this specific set of neuropathic progressions in EDS literature, and also cannot find anyone to confirm that diagnosis. I have been seeing Emory Small Fiber Polyneuropathy specialist, but she is no help, simply told me I was idiopathic for the past three years and offered to treat my symptoms. She said she has no experience with this kind of recent dramatic progression (“this is not normal”), has never had a patient with this kind of progression, nor with EDS.

I am really anxious to understand the CAUSE. What can I do to slow it? Heal it? My nerve density was already measuring at 1-2 (where below ~8-10 is abnormal)…at this point I hardly have any small fiber nerves left! I feel like I should be on some kind of steroid to slow this progression until cause can be determined…but at this point I feel like the damage is so great and I’m afraid permanent, and I still am not finding any leads to follow (that I can afford) for help.

My questions:
1. Anyone out there know anything about sensory/small fiber neuropathy that swiftly progresses?
2. Anybody know any specialists or information about EDS or other hypermobility/connective tissue disorders manifesting this kind of dramatic nerve damage?
3. Any recommendations for how to find someone from the genetics side, or the rheumatologist side, side to help me get deeper autoimmune assessment and/or an actual diagnosis of EDS? Esp in the Atlanta/Southeast region?
4. Any recommendations for how to find someone from the neurological side that actually works with small fiber “sensory” neuropathy specifically? In the ATL/Southeast region?

And yes…I HAVE called the mayo EDS clinic, their wait is three years. I also called them Mayo SFPN/complex neurology clinic, their wait list is one year. I have found specialized clinics that request $3000 for the first visit and require travel across the country. I don’t have any cash to work with, so even functional medicine is out of reach for me right now. I am looking for specialists who actually have some experience with these symptoms, and who working within the insurance system in the Atlanta area; I could also travel to Florida, Tennessee, the Carolinas… I am also looking in CT/New York/Boston, as I have family there, and could manage travel to that region to seek treatment.

Any suggestions of specific clinics, individuals, or approaches/treatments that could help me, especially within existing insurance based practices, would be hugely appreciated.

I am fairly certain about EDS from a lifetime of experiencing symptoms… But I am really wondering about other concurrent or related auto immune/inflammation issues/mast cell activation, and just don’t know where to go and am exhausted and discouraged calling around and coming up with nothing that I can afford without insurance help.