Its just been two weeks, could this be Small fiber neuropathy?

@navid80 yes the Winsantor research is very exciting, and it appears they will be starting a phase 2 trial here in the U.S. before years end. Concern is since they are a small company that they won't have enough funding to see things through.

Yes. Wanting to know who to see at Mayo on Phoenix. Thank you!

Wow - this is exactly what happened to me!! It's like a mirror image of my story except I took the antibiotics Cipro & Levaquin for a "sinus infection" (which I didn't end up even having). My neuropathy came on in a matter of a week or so. I have it all over my body. I am so sorry you are dealing with this. I am getting a second opinion at Mayo as well.

How are your symptoms now? It seems that symptoms come and go and vary every week. I had my appointment with Mayo Clinic last week and did Autonomic testing and testing my blood. He definitely suggested it was small fiber neuropathy and next to do a skin biopsy. I am awaiting my followup now.

My pain is everyday. Only time I have relief is when sleeping. I wake up almost feeling normal but once I’m up the stinging tingling pain starts. I have had all the tests. They came up idiopathic neuropathy. No cause no cure. I want to find the cause

Hi, all. I was referred here because I keep up with WinSanTor developments. My situation is somewhat unique.
I had base of tongue cancer in late 2014. I had chemo (Cisplatin) and radiation, which ended in mid-December 2014. By March 2015, I had developed numbness and tingling in my hands, which eventually spread pretty much to the whole upper body. Today, I still have the numbness and tingling in my hands and arms, and even into my shoulders and both ears, but fortunately minor pain. I have no lower body symptoms at all. I have a significant loss of dexterity, worse on the left side. The right side did improve some over time.
I have had and tried all kinds of treatment from the very start: therapy, medications, tests, etc. I even tried scrambler therapy in Florida; Dr. Stephen D’Amato, to whom I was referred after discussions with Dr. Tom Smith at Johns-Hopkins. Dr. Smith said give it a week and if it isn’t helping it isn’t going to, so that is what I did. (While I was not real confident about the people administering the treatment, it seems to help patients with pain, which I don’t have). It didn’t help. Nothing has helped. I ran across an article about WST-057 clinical trials.
I would try just about anything to get normal use of my hands back. I have the problems typically associated with neuropathy…dropping things, no feeling, constant tingling, loss of upper body strength, trouble with buttons and zippers, typing, etc., and a myriad of other things caused by the cancer treatment. I call it the gift that keeps on giving. I have become used to most of it, most of the time. However, perhaps the worst effect has been my loss of ability in music and tennis. I am 65 years old and had played guitar since I was ten. I am still a collector and try to play, but chords are a nightmare. I switched to bass with enough success that I enjoy it, but I will never be that good.
Tennis was my other past time. I was a pretty good player, with a pretty good serve. The serve is now gone, my ground game is so-so but not like it was. I still play but not often, and when I do it can be pretty frustrating; enough to make me sit in the car and cry more than a few times.
It isn’t that I don’t appreciate the fact I beat the cancer, at least so far, or that I would have made different choices had I known all the things the treatment would do to me. I would have done exactly the same things, because the goal was to beat the cancer. But I have a stressful job as a trial attorney. Guitar and tennis were my outlets for stress, but now those things are almost stressors themselves. I lost 110 lbs. during treatment, so I feel great about my new looks, but it would be great to feel my hands again.
So I press on, hoping for some kind of medical miracle while I am still young enough to do the things I lost.
Thanks for indulging me!

This is totally different but I need to share. I lost the use of my hands. I could not even write my name legible. My arms tingled and burned and felt numb at different times. I was not able to use my arms as normal. Bottom line. Doctor determined I had bone spurs on vertebrae in neck area. I had a cervical and spacers were put in my neck. I am not advising. I can only give you my experience. I did recover the use of my hands and arms. I do have dull pain in neck area probably due to arthritis. I am 82 years old and this was done 4 years ago. I would agree to do it again as I have been able to function. May not apply but I understand your frustration. Keep searching.

Thanks for sharing. I had all the cervical testing done as well and even saw a neurosurgeon. I have neck spasm but it is nothing structural. I do have a form of plexopathy, which may be due to the radiation, or the chemo, or both.

Your story is very close to mine, especially the issues with arms and hands. I also chose the cervical surgery and the placement of spacers. It took three months to get out of the neck brace and then lots of physical therapy. At least I didn’t spend my nights sitting on the edge of the bed in tears because of the pain. My guess is that the spacers have reduced my issues by 50 percent. There is still nerve damage that could not be reversed and some nerves just take forever to heal. And best wishes to you. Thanks for sharing. Chris

@cbcbasket I am a spine surgery patient and I had the same symptoms you described from cervical stenosis. Surgery helped me a lot. I know you are describing the effects of chemo and radiation causing symptoms. It's possible there could be more than one cause for your symptoms, and if you do have spine related symptoms, there might be a fix for that part. I have had problems missed like thoracic outlet syndrome because of overlapping symptoms with something else like carpal tunnel. If spine issues have not been ruled out, you might want to consider it. If you had a whiplash in your past, there could be an undiagnosed spine problem that is causing symptoms. There could also be nerve entrapments in your arms and chest, and even TOS can cause this type of thing.