Am I a Unicorn? Symptoms move throughout the day
I posted my intro in the Member Neuropathy Journey Stories: What's Yours? thread a few days ago (sorry not allowed to post a link yet). My NLD-SNF symptoms affect 95% of the left side of my body but no all 95% at any given time. I could start the day with some pins & needles in my shoulder, that could change to my lower abdomen a bit later, back to my upper arm after that, my chest after that, etc. as well as changing in symptom – maybe numbness, maybe sharp shooting pain, rarely strong electrical current, etc. It was only the initial bout of numbness that was all sites being active at once. Does anyone else have whack-a-mole symptoms and is there any explanation for it?
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Hi Aaron @aaroncush – I thought I would post the link to your story in the Member Neuropathy Journey Stories here – https://connect.mayoclinic.org/comment/780497/. You should be able to post links soon. There is another discussion where members are discussing NLD-SFN that you might find helpful reading what others have shared to see if their symptoms line up while you wait for others to respond.
— Non-Length Dependent Small Fiber Neuropathy:
Almost sounds like a spinal issue involving the Vagus nerve. That nerve controls a lot of functions in the body. A spinal disc may be misaligned pressing on the Vagus nerve throughout the day causing your symptoms. I have a problem with that nerve that triggers hiccups throughout the day for more than 18 months. My doctor had no clue when I asked him why I was having hiccups over 20 times a day. So I researched many top hospitals in the United States and finally found out way. It’s to complicated to explain but I’m down to less than 6 episodes a day now and the Vagus nerve is the culprit. Try researching the Vagus nerve.for your symptoms. Good Luck. @becky1024
I don't think about it much. I never have 2 days the same. Some days the bottom front of both feet are completely numb and the next day it may be the outside of my left leg. Some days it's my fingers on the left hand the next day it's my left forarm (never the right). My stuttering seems to go with moods and stress. Some days I am elmer fudd and some days it is clear and concise.
I just go walking and go with the flow. Whats my choice anyway.
Thanks! I agree with go with the flow and practice that 2.5 years in. I brought it up because pain is increasing again beyond what my home grown supplement regimen can cover. That may mean talking to a doctor again and getting strange looks like I am crazy. Mayo in AZ didn’t want to get a definitive diagnosis last time and wanted me to go straight to the pain clinic – I declined. How can you effectively treat something if you don’t know what you are treating? My own accidental finding that steroids cancel all pain should mean there is more to understand before defaulting to the pain clinic.
Yes, John, I believe you have the right attitude here. Our choices are not much and we should in all likelihood be grateful for what we don't suffer from, particularly in our senior yrs. I am happy I have survived breast cancer over the 10 yrs since I had surgery; my neuropathy does bother me but the PMR is much worse and taking prednisone has its consequences too. I just hope this condition recently diagnosed will go into remission and I can get off prednisone.
Will be going back to the neurologist shortly with a similar story. Hard to habituate to symptoms when they are continually changing. Mine is always the feet, but sometimes arms and hands but sometimes not. Othertimes it feels like my whole body is plugged into an electric socket. Who knows?
Same here! Exactly the same symptoms! I think even neurologists can't help much, because what they prescribe, might work for a while,and then not.
I've learnt to live with neuropathy and just get help from some supplements, cannabis, walk, whatever makes me feel better and happy! Definitely better than pharmaceutical drugs in the long run!
The more I research the more I am amazed by the varied presentations of this disease. Not knowing the exact symptoms and progression is both a blessing and a curse.
Agreed. My symptoms recently worsened so it was back to Dr. Bing to see what other supplements could be taken to lower inflammation. I am my own personal science experiment.