Small fiber neuropathy?

I had chronic pain for about 6 weeks before I got a cancellation with the
Most amazing neurologist .. I was due to have a back operation in 2 days time… my neurologist said cancel the op now it will not fix your problem. He had seen my problem before and treated it successfully. I was hysterical with the pain and he quietly said to me I will fix it. I promise. Put me into hospital the next day for steroid drip and immune suppressant drug. I was allergic to immune suppressant but found one USA one ? I’ll let you know the name .. that I was fine with. But still had chronic pain. Impossible to live with. So went back into hospital and had ketamine drip. It took 3 hrs for the this to work. So wonderful.. no more chronic pain. I had ketamine again for my burning feet which never stopped but unfortunately the pain specialist raised my drip level and I went into a k hole. I’ve got over that. My specialist was furious that this had happened as he hadn’t been consulted. I have a low drug tolerance it seems. At home I took Steroids, imiran which is an immune suppressant gabapentin at night. I now just take steroids but lowering the dose every few weeks and a very low dose of imiran which I will take for the rest of the year. I have a steroid drip and immune Drug of some kind ?every month in hospital. No burning feet my feet nerves are almost recovered but I now have what is the last symptom .. sandpaper feet which the doctor says will be gone in the next month. I get tingling in the feet and lowers legs which is the nerves recovering. Legs are weak even though I was a very fit person before. So that’s the story.journey to hell and back. I hope it helps someone who may have had a similar reaction to a trauma like me. My doctor says the pain will
Never return now the nerves are almost healed. I fear this but he says it will never. happen. He did say that I should never have a back or foot operation. Others are fine. A very rare condition so doctors don’t know what to do. I was so blessed to have such a beautiful kind clever man.

Hello
Did you see my reply I posted. I take only 2 drugs now that affect me in now way plus the monthly drip. Life is good once again. Also take a tablet to help me sleep easily called Dvigo a new tablet for sleep. It is non addictive unlike normison and doctor said it has nutritional benefits. I’ll go off it soon. . He also prescribed cannabis oil to help me deal with sleep issues as he doesn’t like normison. Wanted me off Normison. Says it blows your brain. Not sure if cannabis oil helped but maybe. Don’t take it now. My medical diagnosis is non systemic vascular neuropathy. Hard to find much about it as it’s a rare disorder. Ask me if you need more help.

What is in the monthly drip? What type of facility does the drip? What are the 2 meds you currently take? Is any of this covered by medical insurance? Thank you!

Yes. Happened to the nerves in my feet after a foot operation as my strong immune system kicked on to protect my feet but instead starting killing my nerves in both feet. I had a blood biopsy of the sensory nerve panel in my feet done in Texas which showed the damage. I am recovering after treatment.

I'll be honest and say I haven't scrolled through all of the likely amazing and helpful comments here. There's a big community of people with small fiber neuropathy, for better or worse on Connect >_<

Your post caught my eye because you were asking about if the skin punch biopsy makes a difference in treatment, and I needed to make the same decision back when I was having my workup done. This has probably been mentioned elsewhere by now, but generally no, if you don't have other more severe symptoms, it wouldn't impact treatment for SFN. But that may be because the first line treatments are gabapentin, etc. But you would still probably want your care team to rule out other potential causes of your symptoms.

I had a skin punch biopsy done, and I knew this (and other causes were ruled out)...but I wanted the certainty of knowing it was the right diagnosis. And it's true, that's the only way to confirm sensory SFN, but at the same time, it doesn't catch every case. There's still a decent margin of error, per my neurologist, but I can't remember the statistic off the top of my head. My numbers were "low normal," so ironically it still didn't prove I had small fiber neuropathy, and it didn't change my treatment. Small fiber neuropathy can also wax and wane or the symptoms can change, especially if the underlying cause is unknown. This happened to me, as I started with symptoms in my feet and calves, which progressed to both legs and included one arm. Then the pain in my arm resolved and the tingling and sharp pains in my legs improved. Figured I'd share my experience, and wishing you all the best.

How did Dr diagnose non systemic vascular neuropathy?

I was diagnosed finally with non systemic vascular neuropathy. I did put a reply up earlier today but not sure where it goes as I’m new to this chat. I have suffered so much in the past year so I joined to help other people who may be suffering possibly with the same problem as it very rare and difficult to diagnose and the pain without treatment is diabolical. my chronic pain stopped after 3 hrs on a ketamine drip in hospital. Amazing. Take care that they don’t give you too much. Needs to be well supervised. I also had steriod drips and an immune support drip in hospital. I used to take steroids, an immune suppressant (still do )as well as 300 mg of gabapentin which I didn’t like. No more gabapentin now for the past 4 months as no nerve pain.
I have drips of 2 drugs steriod and imiran every month. My immune system has stabilised and the inflammation has gone. As before I am taking 4 mg prednisone a day and Imuran an immune suppressant drug as well as vitamins … vitamin B12 an insolar tablet and Centrum Advance every day and have a B12 injection every month. My immune system has returned to a normal level. I’ll be off steroids soon and will remain on Imiran .. small dose every day till the end of year .. hopefully..I m not sure how long I will have monthly drips. I take a non addictive sleep helper called Dyvito.. a newish drug that seems to work well with no after effects. All tablets are prescribed by my specialist who presently is the only neurologist I know of who can treat my condition. None of the tablets I take now have had any bad effects. I did try cymbalta initially for leg tingles but stopped because of nausea. I was prescribed cannabis oil but I’m not sure if it helped. Very very expensive and needs doctors script to get it in my state NSW. Rolling pin is great for leg aches. I swim gently to strengthen my legs. My progress has been monitored by my neurologist in Sydney.. he is amazing and does research as well. I thought there would be many USA neurologists who could help you but as I said before it is an rare disorder and difficult to diagnose.. not sure why. To get a correct diagnosis my blood sample was sent to Texas as we are behind in small nerve testing methods in Australia presently.
We are fortunately in Australia as we have a vg Medicare system so when I’m in hospital as an inpatient I pay for very
Little. Specialists in their rooms cost a lot but if you have private health insurance you can claim which reduces the costs. Tablets are not too expensive and the monthly drips don’t cost me anything as I go in as an inpatient as with the MRI…I’m very very fortunate. Unsure about your system. I wish you all the best.I did take Palexia IR but only when pain was unbearable. Not now though. Pls let me know if you have any success.

Have a nerve biopsy as this will tell the doctor what you have. USA do it through the blood sample or skin biopsy I believe which is more accurate than an MRI. My blood sample showed damage to my sensory nerve panel and then the specialist was able to help me with treatment to repair the foot nerves. I hope this helps you decide. Ask lots of questions to the doctors. I did.

MRI in Sydney Hospital and also blood sample sent to Texas hospital

Good evening @ebero. Thank you for the reminder to eliminate processed sugar. I have noticed recently that more items like fruit juices are available with "NO SUGAR". So now I look for those options.
Chris