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Am I getting the best treatment for my SFN?
I had a fairly serious bout of Guillain Barre when I was 30. My health remained excellent and then I injured my back in 1996, needing a two level spine fusion in 1997. I’ve been dealing with the resulting post-fusion syndrome, additional fusion revisions, and also tried spinal cord stimulators. It was after the stimulator placement that I began to notice strange and disconnected symptoms, perfectly described by autonomic small fiber neuropathy. Starting with hyperhidrosis, my dermatologist suggested I see an endocrinologist which was followed by a rheumatologist, cardiologist ophthalmologist, pulmonologist and finally neurologist where I finally received the SFN diagnosis after a skin biopsy. Every one of those doctors knew about my GB history and that I started to have symptoms after the stimulators were put in. I often asked about some sort of autoimmune response but was never taken seriously. It took many months with the neurologist to diagnose SFN, and three years later I am with a neurologist in the same group who specializes in neuromuscular issues. I should mention at this point that I had the stimulator removed about three years ago-they were ineffective anyway. I recently completed a round of IV steroid therapy with this neurologist, presumably to quiet any auto immune action. Unfortunately he’s away on vacation so I’m waiting for findings. However I felt progressively worse during therapy, and got even sicker after it was over. I hadn’t been so ill since I’d had GBS decades ago. Every issue from sweating to blurred vision to lightheadedness is as bad as it’s ever been, certainly worse than it was when I started the therapy. I even lost most of my eyelashes??!!! I looked at some labs that were drawn halfway through the IV therapy, and was surprised to see that white blood cell counts & other immune defenders were high. I would have thought steroids would suppress immune response, instead it seems to have “put it on steroids” Ha! I don’t understand what’s going on. In addition, and I don’t think it’s a small point, I had major back surgery in August 2022, with a couple of big complications requiring two extra unplanned surgeries. They found a blood clot, a sacral fracture, and I ended up having to go to inpatient rehab for a month because I literally could not walk. I had such bad nerve damage in my lower legs they thought initially I had footdrop, but that was not the case. My strength has improved with PT and exercise therapy, however I have no strength/stamina to walk more than 10–15 minutes and the neuropathy remains unchanged for a year now. I keep thinking I might be more a candidate for IVIG, but still no one is really listening OR GIVING ME A REASON WHY OR WHY NOT. I will see when the doctor returns from vacation. Losing my patience and mind!
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Welcome @debgio11, You are not alone in your quest to find an answer to your question am I getting the best treatment for my SFN. I think that many of us have struggled with that question at one time or another and may still be trying to find an answer. My best suggestion would be to continue what you are doing now by learning as much as you can about your condition and what treatments are available that may offer some relief. There are quite a few discussions that have been started by members on a quest for an answer to what helps. You might want to look through the list of discussions and comments by other members to see if something sounds like it might help. Here's a link with the search results - https://connect.mayoclinic.org/search/discussions/?search=small%20fiber%20neuropathy%20what%20helps.
It sounds like you've seen a lot of different doctors through the years and the IVIG therapy didn't help much if any. You mentioned that you are waiting to see your doctor when they return from vacation. Have you thought about seeking help or a second opinion at a teaching hospital?
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4 ReactionsCould the illness you described during and after IV steroid therapy be from the steroids? As far as I know even oral steroids can cause most if not all of those side effects (not sure about losing eyelashes, but steroids can cause thinning of the skin and hair), especially at high doses within a short amount of time. Steroids also cause elevation of the white blood cell count.
My situation is a little bit similar to yours... I actually was diagnosed with POTS and fibromyalgia--that explained the autonomic symptoms and it's not uncommon to also have small fiber neuropathy.
I had to see too many neurologists until I got someone I felt comfortable with, and still I sort of have doubts because there's not much to go in with small fiber neuropathy unless you can connect it to a specific cause, and even then the options are somewhat limited. Also every single one of them, including the neurologist I saw at Mayo missed the opportunity to test me for POTS. And I saw 7-8 neurologists; I've lost count at this point.
In my experience seeking IVIG, all the neurologists I've met with except for one seriously considered IVIG. And that was specifically because I have the FGFR3 autoantibody (which they've explored treating with IVIG with mixed results), and she was specifically doing research on IVIG for this condition. My sense was that unless someone is specifically diagnosed with a neurological condition that's indicated for it (like Guillaune Barre), it's usually a non-starter because there's not much evidence and getting it through insurance is very difficult.
It's frustrating that your doctor is on vacation so it's just leaving you waiting... As John was waiting, maybe it's time to get another opinion, even if it's for reassurance that you are getting the best care? Of could you seek care at somewhere like Mayo or Cleveland Clinic that would look at things in a more integrated way?
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2 Reactions@debgio11
Hi, Deb. I am a 54 year old female with small fiber neuropathy, cervical spondylitic myelopathy, cervical and lumbar stenosis, poly neuropathy, Hashimoto’s/hypothyroidism, etc. I had ACDF surgery at c5c6 due to spinal cord compression and injury. I hear you on your frustration. I am getting a new neurologist end of April and need to ask for updated brain MRI, EMGs, nerve conduction testing, MRN, and bloodwork to rule out MS/CIDP/MSA. I have severe fatigue, weakness, numbness in arms/hands/legs/feet and spinal/hip pain/numbness. I am in bed or on the couch most of the day and can’t do much which is frustrating since I was always so productive and energetic. I am now not able to work and dealing with depression. I am a single parent of a teen and his sole provider. Scary! I also notice cognitive decline and difficulty focusing, reading, concentrating, etc. and having a hard time breathing deeply/singing (loved to sing at church). I do think there is a lot to small fiber neuropathy and autonomic nervous system dysfunction. My gallbladder stopped working (biliary dyskinesia) and feel other organs are not functioning optimally. I understand that CIDP needs a spinal tap to diagnose. It seems many neurologists do not know much about autonomic nervous system dysfunction since it affects so many organs and systems. I understand the EBV, HSV and COVID vaccines/infections negatively impact the CNS/PNS. Hang in there and keep advocating for yourself to get answers and treatment to improve your quality of life. I am struggling for the same.
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2 ReactionsCan't one of the doctors in the group help you?
I haven’t had IVIG actually. I just finished a 5 day course of IV steroids, which seemed to make all my autonomic SFN symptoms worse.
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4 ReactionsI’m so sorry for everything you’re going through. It’s just maddening and you feel like you’re spending your wheels and getting nowhere. The neurologist I’m seeing mentioned a lumbar puncture but quickly ruled it out as invasive. I’m going to ask him about it when I see him because I’ve no problem with getting one — although I have so much hardware there, it could be an issue. I think sometimes our doctors can’t think out of the box, and we don’t always fall into a simple category. I hope you’ll get some answers there soon.
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3 ReactionsDon’t know if you meant this one for me or someone else, the neurologist I am seeing now is actually this fourth one in the practice. Feel like a ping-pong ball!
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1 ReactionWell, maybe now is the time to get a new neurologist or find a doctor who specializes in neuromuscular diseases.
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2 Reactions@26sabrina Connect members in the group are patients like yourself. There are no doctors that monitor the groups, just us patients who can share our experiences and offer suggestions.
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