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

Posted by italapino @italapino, Sat, Feb 16 8:36pm

Hi all. I am new to the group and have on my journey of getting confirmation of SFN. All started tweeks ago. Started with mild pins and needles on hands and feet and lasted for 5 days. The next day my feet to knees and fingers to forearms felt sensitive to temperature and felt sunburned. The skin sensitivity has now spread to random and more places with intermittent burning. My hands and feet get cold and wet real quick now, I wake up with full on adrenaline with what feels like trembling, light winded quicker, noticeably dry eyes/mouth sometimes, my feet and hands more like ache/throb, today a pinky has been a little bit more stubburn. I saw a neuro last week and he said its nothing of a concern and its rare that neuropathy progresses that fast. Has everyone else had that fast of a progression in relation to your neuropathy? I'm getting a second opinion with Mayo in Arizona in a couple weeks.

A little background, January I had some bouts of non-rotational vertigo and developed tinnitus and both have since gone away. ENT ruled it as possible eustachian tube dysfunction. The meds I took for that were, sinus flushes, nasal spray (flonase), meclizine, and ativan. My first neurologist stated that these meds would not have caused what I am feeling now.

Liked by teetee7

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.

@jo54

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.

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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.

@jo54

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.

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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

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!

Jump to this post

@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.

@jenniferhunter

@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.

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Thanks, but I saw both and orthopedist and neurosurgeon, and had multiple scans. Not cervical.

All of us seem so baffled by what causes this SFN. I believe my issue was there was always some low grade numbness for years and than some sort of " spark " threw it into full blown SFN. I was prediabetic and got my numbers down by diet and will continue to monitor. But the symptoms are all still there and worse. UGH..

@italapino

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.

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@italapino Some days are better than others, but it's alway there if you know what I mean… Have you received your results yet? My symptoms initially came on very suddenly, but now have plateaued.

@italapino You know your varied and strange nerve responses give me recall to the bout of tick borne illness I had in 2016. I had been free of my really bad PN symptoms of electrical shocks in feet for over 3 years but then all of a sudden had the strangest onset of these pains while sitting in a very comfortable chair. Two days later came all sorts of joint pain, headache that would come and go, and weird hot and cold sensitivities. After several days of this I went to doctor and they started doing tests, and my white and red blood cell counts were crazy bad. After little help from them, and constant night sweats that caused me to change pillows and sheets, I ended up in hospital totally dehydrated and they treated me with IV's and antibiotic for a tick borne illness even though no test results showed positive for the disease. I was totally better within 4 or 5 days. Their tests are only partially successful in identifying some tick diseases. Originally i had thought it was just PN when the shocks came on, but it was only the tip of the iceberg on that illness. So you should perhaps consider where you have been and whether it could be just a dormant disease coming back to settle in for a visit. May be a long shot, just thought I would pass it along since it came on and progressed so suddenly for you. Good luck on finding an answer, hope it isn't PN.

Liked by Jennifer Hunter

@judypall

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

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im in same boat. Came back from neuro yest, they basically ran every test u can and ntg coming back. Only thing that did stand out my mercury was high. I know metals etc can cause toxic to nerves. It was at 15 , i did chelation and now at 4. I dont see any improvement.

I can relate. My small fiber started in right foot, before i knew it was on other foot , up the calfs then felt in hands in forearms. Sometimes i feel burning in back of shoulder blade. Most of the time the discomfort is in my legs. Sitting at work irritates the condition. My hamstrings get super tight and pain and my calfs hurt. Burning in my feet seems endless at times. I dont have any loss of strength etc Thank God. Its more sensory pain related. I was having a real good stretch for 6 months and felt good. Pain was around a 2/3 at most. Recently i had a flare up and went back to 5/6 level. This happens, stress is no good for this condition. I notice when i dont get sleep or am stressed its at its worse. I was confirmed with the skin biopsy. Im in the idopathic group. Just went back to neuro and going back on the lyrica. Hope this can help so i can just have 2-3 hours a day without thinking about this or feeling some sort of discomfort.
Good Luck

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