1. < Neuropathy

SFN- 80% loss of sensation, no pain.

Posted by luckycharms4me @luckycharms4me, Oct 20, 2022

Hello- In 2006, I was diagnosed with small nerve fiber neuropathy- idiopathic. I had a loss of sensation everywhere in my body, no pain. At that point it was about 40% of loss. In 2019, I had another occurrence/attack where it all got worse and was around 70%. I just had another occurrence in Sept where it changed again and I’m around 80% loss of sensation.

I can’t feel my eye lids when I blink, I can’t feel my gums, if I pinch my upper shoulder/neck area where everyone has that pinch when you squeeze- I feel nothing. When I rub my skin, I don’t feel my muscles underneath. It feels like my entire body is wrapped in bubble wrap – I can feel touch but it’s so dull. If I scratch myself really hard, I feel tingles. I am a very active person and exercise 5 days a week to see if it helps. Mobility currently isn't an issue.

The neurologist I saw in 2019 said it was all in my head even though I had a skin biopsy in 2006 saying I had SFN. He told me to take Lexapro or Cymbalta and I wouldn’t feel anxious and that would help. I’m actually not an anxious person at all. I only got worried when things got a lot worse in 2019. My latest Neurologist retired so I feel like with this last outbreak/ issue I need to start over….again.

I honestly don’t know what to do but am trying to stay positive. I feel like I should have blood work done again to check B12’s, etc. to see if taking higher doses of that, folic acid, magnesium, maybe that would slow progress. If this gets worse down the road, I'm hoping organs won't be impacted.

Has anyone out there had luck getting sensation back after being diagnosed with SFN or other neuropathies?

Are there supplements, things that you think have slowed progress or improved symptoms for you? I’m willing to try anything at this point. Thanks for any advice or assistance!!!!

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Oct 20, 2022

Hello @luckycharms4me, Welcome to Connect. I know it can be scary and worrisome when you have a condition like neuropathy and there are not a lot of answers out there. You are not alone and learning as much as you can about your condition is the best way you can become a better advocate for your own health.

I can relate somewhat to your symptoms as I only have the numbness and a little tingling with my small fiber peripheral neuropathy but no pain. You might want to read through the following discussions to learn what others have shared:

-- Neuropathy: Numbness only, no pain:
https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
-- Paresthesia, abnormal sensations:
https://connect.mayoclinic.org/discussion/paresthesiaabnormal-sensation/

You mentioned your neurologist retired and you feel like you have to start all over. Have you thought about seeking help at a teaching hospital or major health facility?

REPLY
1 reply
luckycharms4me | @luckycharms4me | Oct 20, 2022
In reply to @johnbishop "Hello @luckycharms4me, Welcome to Connect. I know it can be scary and worrisome when you have..." + (show)
@johnbishop

Hello @luckycharms4me, Welcome to Connect. I know it can be scary and worrisome when you have a condition like neuropathy and there are not a lot of answers out there. You are not alone and learning as much as you can about your condition is the best way you can become a better advocate for your own health.

I can relate somewhat to your symptoms as I only have the numbness and a little tingling with my small fiber peripheral neuropathy but no pain. You might want to read through the following discussions to learn what others have shared:

-- Neuropathy: Numbness only, no pain:
https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
-- Paresthesia, abnormal sensations:
https://connect.mayoclinic.org/discussion/paresthesiaabnormal-sensation/

You mentioned your neurologist retired and you feel like you have to start all over. Have you thought about seeking help at a teaching hospital or major health facility?

Jump to this post

Hello John and thanks for the links! I started reading over some of those yesterday. I think I need to find a new local neuro to get referred to a major one. I live near Green Bay, WI so my next step is probably Mayo in MN.

REPLY
1 reply
NJ Ed | @njed | Oct 20, 2022
In reply to @luckycharms4me "Hello John and thanks for the links! I started reading over some of those yesterday. I..." + (show)
@luckycharms4me

Hello John and thanks for the links! I started reading over some of those yesterday. I think I need to find a new local neuro to get referred to a major one. I live near Green Bay, WI so my next step is probably Mayo in MN.

Jump to this post

luckycharms4me - I went to Mayo in Rochester in 2020 right before the pandemic hit, traveled about 1200 miles and if you can get an appointment, I can assure you that you will not regret going. They are phenomenal and even if they can't give you the cause of your condition, they will likely inform you what it is that you have. Wish you the best.

REPLY
1 reply
luckycharms4me | @luckycharms4me | Oct 23, 2022
In reply to @njed "luckycharms4me - I went to Mayo in Rochester in 2020 right before the pandemic hit, traveled..." + (show)
@njed

luckycharms4me - I went to Mayo in Rochester in 2020 right before the pandemic hit, traveled about 1200 miles and if you can get an appointment, I can assure you that you will not regret going. They are phenomenal and even if they can't give you the cause of your condition, they will likely inform you what it is that you have. Wish you the best.

Jump to this post

Thanks so much for your response! I hope all went well with you. I filled out my survey a few days ago to try and get an appointment. I’m crossing my fingers. I would really love to get a plan of what to do next. Take Care!

REPLY
1 reply
NJ Ed | @njed | Oct 24, 2022
In reply to @luckycharms4me "Thanks so much for your response! I hope all went well with you. I filled out..." + (show)
@luckycharms4me

Thanks so much for your response! I hope all went well with you. I filled out my survey a few days ago to try and get an appointment. I’m crossing my fingers. I would really love to get a plan of what to do next. Take Care!

Jump to this post

luckycharms4me -- For my PN, I had about 5 days of tests, skip a day or so and perhaps 2 in one day. I my case, first the neuro doc did full evaluation, then ordered the tests and schedule was given to me that same day when to return and date of last test. After last test, doc gave my wife and I the results. I suggest you take someone with you, a second pair of ears is helpful. Because we flew, we stayed a week, and it worked out well. An amazing place!! Good luck! Ed

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