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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.
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@erikainatlanta It seems that you’ve been dealing with this for a very long time. I’m so sorry. It has been documented that most autoimmune diseases occur in woman and diagnosis can take years. I can give you some resources for you to investigate.
https://rarediseases.info.nih.gov/contact/ This link is to Genetic and Rare Diseases. They should have lots of information available.
Have you contacted large universities in your state? Most of them do research and have some top doctors. When I got sick with an autoimmune disease that impacted my brain, my husband contacted the university medical center in a nearby city. We were able to find the only neuro-immunologist in the state. She works closely with the Mayo Clinic and is just great
Will you checkout these resources and let me know what you learn?
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3 ReactionsI understand your frustration! My sympathy. I wish I had more ideas for you but maybe these will help:
Maybe try your insurance company resources. Mine has a nurse contact line. Their nurses have helped me.
Also, your insurance may have a list online of specialists who accept your insurance.
It sounds like you have done your research. This is a long shot, but maybe you could look at the names of the authors of the articles you have read and try to get an appointment with or a recommendation from one of them?
Maybe, when you hear the long wait for an appointment, you should make an appointment anyway so that you get on their list asap. The wait time won't get shorter and you can always cancel the appointment if you get a sooner one.
I wish you the best of luck and success in your search.
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3 ReactionsYou might also look at a wonderful book about EDS that will make you at least as educated as the providers you have been seeing, and maybe more so: Disjointed. It was recommended to me by the mayo clinic EDS program. Good luck!
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1 ReactionHi there from. North Carolina. Thanks for sharing. I am going through the same! I was told it's raynaud's in my foot and neuropathy. I deal with the numbness tingling ECT.was told i had fibromyalgia. It's very hard to get a "real doctor" to actually take time and help with the issues you have and figure out the cause instead of the solution so to speak. I have other medical problems and have 5 specialist now and I'm currently searching for new Doctors elsewhere because in my area, it's not about the patient sadly. Wishing you the best! The struggle is really hard trying to find a medical professional that's actually taking their intelligence and putting it to use and helping people feel better!!!! 🤗
A friend of mine was just diagnosed with Inclusion Body Myositis. Her symptoms sound very similar to yours. Maybe this is something worth researching for you. She went to a hospital in White Plains, NY to see a specialist after her diagnosis in our small town.
SFN is common in both POTS and EDS, but I don't think the sudden worsening / decline is usual. Have you tried seeing neurology for this issue? They're usually the ones who diagnose/treat SFN, at least around here (Seattle area), and can screen for the demyelinating disorders.
I wish I had some concrete info for you, but I am also dealing with an "ideopathic" (almost) diagnosis. Since I have not been able to get much further than this in the last seven years, I am now just trying to find out what OTHER things may cause the same types of symptoms and progressions and see if there is any worthwhile info following that track.
For me, thus far, it seems like there may be a connection to familial pernicious anemia, B12 and folate status, high homocysteine, and high cholesterol. But, there could be environmental factors that I am completely unaware of.
Getting cooperation from a medical professional to test for and eliminate what may be these possible causal factors is another problem altogether. I'm also not entirely ruling out auto-immune stuff or MS for myself.
I feel it is very important to be one's own best advocate in the absence of a clearer diagnosis. Hopefully, this website is a way to help that along. Good luck.
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1 ReactionHave you had Nerve Conduction Studies lately?
Have you seen a real neurologist?
Glad you’re open to other than EDS.
I shouldn’t get involved because I just saw this group and am not regularly going to it.
But Karma is a bitch and I’ll try my best to not lose your post.
I would call it an answer, but I’m old fashion.
Addendum: I didn’t know this forum would actually post my user name as a screen name. I need to change that. I have EDS and Mayo directed me here and I didn’t read the fine print. I am NOT a practicing doctor. I’m a patient. But I’m not an idiot. You live in Atlanta too. You need someone who is NOT me to treat you, but your doctor lives in this medical Mecca and can’t find a good neurologist? I’ll answer if you post.
Sorry, learning.
The two above are responses to
“Erika in Atlanta”.
I’m not good with these platforms, and have no way of knowing if Erika will get my message. Will someone get them to her?
Is that possible?