1. < Neuropathy

Non-Length Dependent Small Fiber Neuropathy

Posted by kathleen123 @kathleen123, Feb 22, 2021

there is much discussion of PN but seldom is much said about non-length dependent neuropathy. I guess it must be relatively rare. The condition affects all different parts of the body. I think it is usually idiopathic as is mine is. I was diagnosed with it more than 10 years ago. I’d like to hear from others with this type of small fiber neuropathy.

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srm2009 | @srm2009 | Sep 29, 2022
In reply to @amyj2022 "I understand the feeling, you mention using medical cannabis, I live in a state that very..." + (show)
@amyj2022

I understand the feeling, you mention using medical cannabis, I live in a state that very much discourages this option. Do you get a prescription for yours? I feel it would help since my box of lotions, gels etc do very little. Lidocaine seems to help off and on, so does Topricin, but nothing helps enough.

Jump to this post

Sorry to hear your state has not adopted enlightened policies. Medical and recreational cannabis, for me, has been the more effective pain reliever, much better than medications such as Cymbalta or Gabapentin. Alas, it is a double-edged sword for PN sufferers with severe imbalance issues. I'm still looking for a silver bullet.

REPLY
rnlorena | @rnlorena | Sep 29, 2022
In reply to @exitframeleft "Non-Length Dependent SFN- who else has this diagnosis? Recently DX with this definitively from skin biopsy...." + (show)
@exitframeleft

Non-Length Dependent SFN- who else has this diagnosis?

Recently DX with this definitively from skin biopsy. Of course as everyone who has gone through the lengthy diagnosis process knows , they don’t know a whole lot about this specific type of neuropathy. At the end, it is still just “treat the symptoms and hope it doesn’t progress. 2 possible causes for me: B6 toxicity from multivitamin with 3x the amount needed that I haven’t taken for 2 months and the other one that it could also be: autoimmune, specifically 35 years of Crohn’s disease. Neuro still doing testing to rule out other underlying causes. Current symptoms for me are in the feet: tingling, numbness, burning and pain. Odd and unsettling combo that I feel every minute I’m awake. On 2700mg gabapentin and it helps a bit, but you basically just have to push throuugh. I’ve had symptoms for 2 years and I’m fortunate I live near the Texas Medical Center and have lucked into having a neuro who specializes in SFN.

Jump to this post

I have read a lot of everyones stories. I have a question of everyone who was diagnosed with Idiopathic Small Nerve Fiber Neuropathy non-length dependent. I woke up one day with full on set of pin pricks all over including in my eyes. That was my beginning. I was right at the end of the 6 weeks from getting my two shots for Covid. I did some research and I read that If you were going to have a reaction to a vaccine that it would be within six weeks of getting it. Of course I have no way of verifying that it was the vaccine. I was tested for quite a few autoimmune diseases but I read you can have one and not know it. I read a lot about those but I knew I didn't have any symptoms of anything. Come March of 2023 it will be a year since I had those pin pricks show up. They now come and go whenever they chose to. The burning that started in the beginning in my left hand went away but has come back and it comes and goes. My Neurologist told me that it is rare for someone to wake up with pinpricks like I did. I of course am still struggling with the WHY and the HOW? I am still seeking any information I can get. In April of last year I woke up and had a funny feeling in my chest. It was my heart rate that was up. Testing confirmed it was as high as 183. So I started taking medicine for that. Then I noticed one day my heart rate was 97. I did another monitor for my heart and now I have the diagnosis of Paroxysmal Supraventricular Tachycardia. When I saw the heart Dr. who specializes in rhythm he said to me it is normal what you have. In my mind I didn't think it was normal and it kinda stopped my train of thought. I went home and looked it up and it says it can be normal in people. He is a great Dr. It was just me. I say what a coincidence that it has come up right after the pinpricks. I quit taking the beta blocker because it did not help my heart rate. I know that SNF can affect the autonomic nervous system. The heart thing is very scary to me. I have short bursts of high heart rate and don't know when it occurs. I know that if it were to be sustained I would be going to the ER. I have dealt with each thing as it has occurred as best I can. I know a lot of you have been dealing with SNF for years. I feel like the odd one out because of my symptoms and how it started. I occasionally have fasciculations. With idiopathic is there anyone who has had similar to what has happened to me? I know I am repeating myself. Sorry. I did try to get appt in Jacksonville Mayo. I was told they are all booked up. I tried Birmingham and I tried Texas Heart in Houston. No such luck. I am not giving up at all. As a retired nurse I realize that mostly it will be to treat whatever symptoms show up.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Sep 30, 2022
In reply to @rnlorena "I have read a lot of everyones stories. I have a question of everyone who was..." + (show)
@rnlorena

I have read a lot of everyones stories. I have a question of everyone who was diagnosed with Idiopathic Small Nerve Fiber Neuropathy non-length dependent. I woke up one day with full on set of pin pricks all over including in my eyes. That was my beginning. I was right at the end of the 6 weeks from getting my two shots for Covid. I did some research and I read that If you were going to have a reaction to a vaccine that it would be within six weeks of getting it. Of course I have no way of verifying that it was the vaccine. I was tested for quite a few autoimmune diseases but I read you can have one and not know it. I read a lot about those but I knew I didn't have any symptoms of anything. Come March of 2023 it will be a year since I had those pin pricks show up. They now come and go whenever they chose to. The burning that started in the beginning in my left hand went away but has come back and it comes and goes. My Neurologist told me that it is rare for someone to wake up with pinpricks like I did. I of course am still struggling with the WHY and the HOW? I am still seeking any information I can get. In April of last year I woke up and had a funny feeling in my chest. It was my heart rate that was up. Testing confirmed it was as high as 183. So I started taking medicine for that. Then I noticed one day my heart rate was 97. I did another monitor for my heart and now I have the diagnosis of Paroxysmal Supraventricular Tachycardia. When I saw the heart Dr. who specializes in rhythm he said to me it is normal what you have. In my mind I didn't think it was normal and it kinda stopped my train of thought. I went home and looked it up and it says it can be normal in people. He is a great Dr. It was just me. I say what a coincidence that it has come up right after the pinpricks. I quit taking the beta blocker because it did not help my heart rate. I know that SNF can affect the autonomic nervous system. The heart thing is very scary to me. I have short bursts of high heart rate and don't know when it occurs. I know that if it were to be sustained I would be going to the ER. I have dealt with each thing as it has occurred as best I can. I know a lot of you have been dealing with SNF for years. I feel like the odd one out because of my symptoms and how it started. I occasionally have fasciculations. With idiopathic is there anyone who has had similar to what has happened to me? I know I am repeating myself. Sorry. I did try to get appt in Jacksonville Mayo. I was told they are all booked up. I tried Birmingham and I tried Texas Heart in Houston. No such luck. I am not giving up at all. As a retired nurse I realize that mostly it will be to treat whatever symptoms show up.

Jump to this post

Hi @rnlorena - I have had small fiber PN with just the numbness and some tingling for more than 20 years (almost 80 now). My heart rate also seems to jump around but not normally over the mid 90s unless I'm exercising. I have one of those Kardia mobile devices that I use for taking an EKG and was in a panic the first time it told me I had signs of AFib but really didn't feel any different than normal. It regularly shows my EKG as Sinus Rhythm with Supraventricular Ectopy or Supraventricular Tachycardia. Early on I showed it to my PCP and at first they were concerned but then after checking said it wasn't anything to be concerned with. The Kardia app does tell me the same thing that this can be present in healthy adults and in adults with heart conditions.

I do think it's worth getting it checked out. I know it can be difficult to get an appointment at Mayo due to the overwhelming number of patients seeking help during this current environment. Have you thought about checking at a Mayo Clinic Care Network location?

The Mayo Clinic Care Network is a select group of independent health care providers, carefully vetted by Mayo Clinic and granted special access to Mayo's clinical, educational, research and operational knowledge, expertise and resources. Here's a complete list of Network members with links to their websites:
– https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

REPLY
exitframeleft | @exitframeleft | Sep 30, 2022
In reply to @rnlorena "I have read a lot of everyones stories. I have a question of everyone who was..." + (show)
@rnlorena

I have read a lot of everyones stories. I have a question of everyone who was diagnosed with Idiopathic Small Nerve Fiber Neuropathy non-length dependent. I woke up one day with full on set of pin pricks all over including in my eyes. That was my beginning. I was right at the end of the 6 weeks from getting my two shots for Covid. I did some research and I read that If you were going to have a reaction to a vaccine that it would be within six weeks of getting it. Of course I have no way of verifying that it was the vaccine. I was tested for quite a few autoimmune diseases but I read you can have one and not know it. I read a lot about those but I knew I didn't have any symptoms of anything. Come March of 2023 it will be a year since I had those pin pricks show up. They now come and go whenever they chose to. The burning that started in the beginning in my left hand went away but has come back and it comes and goes. My Neurologist told me that it is rare for someone to wake up with pinpricks like I did. I of course am still struggling with the WHY and the HOW? I am still seeking any information I can get. In April of last year I woke up and had a funny feeling in my chest. It was my heart rate that was up. Testing confirmed it was as high as 183. So I started taking medicine for that. Then I noticed one day my heart rate was 97. I did another monitor for my heart and now I have the diagnosis of Paroxysmal Supraventricular Tachycardia. When I saw the heart Dr. who specializes in rhythm he said to me it is normal what you have. In my mind I didn't think it was normal and it kinda stopped my train of thought. I went home and looked it up and it says it can be normal in people. He is a great Dr. It was just me. I say what a coincidence that it has come up right after the pinpricks. I quit taking the beta blocker because it did not help my heart rate. I know that SNF can affect the autonomic nervous system. The heart thing is very scary to me. I have short bursts of high heart rate and don't know when it occurs. I know that if it were to be sustained I would be going to the ER. I have dealt with each thing as it has occurred as best I can. I know a lot of you have been dealing with SNF for years. I feel like the odd one out because of my symptoms and how it started. I occasionally have fasciculations. With idiopathic is there anyone who has had similar to what has happened to me? I know I am repeating myself. Sorry. I did try to get appt in Jacksonville Mayo. I was told they are all booked up. I tried Birmingham and I tried Texas Heart in Houston. No such luck. I am not giving up at all. As a retired nurse I realize that mostly it will be to treat whatever symptoms show up.

Jump to this post

Sadly, I agree that so many disorders and diseases end up being handled by treating the symptoms. I also agree that you can't give up and you have to really push hard on your healthcare providers as you advocate for testing or getting questions answered. I am fortunate that, so far, my Neuro wants to explore every option to see if we can find out the underlying cause to my NLD SFN. Good luck!

REPLY
hoeewaa | @hoeewaa | Sep 30, 2022
In reply to @exitframeleft "Non-Length Dependent SFN- who else has this diagnosis? Recently DX with this definitively from skin biopsy...." + (show)
@exitframeleft

Non-Length Dependent SFN- who else has this diagnosis?

Recently DX with this definitively from skin biopsy. Of course as everyone who has gone through the lengthy diagnosis process knows , they don’t know a whole lot about this specific type of neuropathy. At the end, it is still just “treat the symptoms and hope it doesn’t progress. 2 possible causes for me: B6 toxicity from multivitamin with 3x the amount needed that I haven’t taken for 2 months and the other one that it could also be: autoimmune, specifically 35 years of Crohn’s disease. Neuro still doing testing to rule out other underlying causes. Current symptoms for me are in the feet: tingling, numbness, burning and pain. Odd and unsettling combo that I feel every minute I’m awake. On 2700mg gabapentin and it helps a bit, but you basically just have to push throuugh. I’ve had symptoms for 2 years and I’m fortunate I live near the Texas Medical Center and have lucked into having a neuro who specializes in SFN.

Jump to this post

On the onset of my neuropathy I had the pin pricks down my right arm that seemed to follow a large protruding vein. I thought it was from an old accident injury that severed part of my little finger and broke all my fingers at the top joints. One of my doctors told me it was from my nerves in my neck were being tangled (?) with my neck bones C6(?) . Now the tingling is joined with an ache in my right shoulder. Recently (the last couple of weeks) I get very dizzy that cause me to walk unsteady (as if I was drunk). Is this caused by my neuropathy?

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 1, 2022
In reply to @hoeewaa "On the onset of my neuropathy I had the pin pricks down my right arm that..." + (show)
@hoeewaa

On the onset of my neuropathy I had the pin pricks down my right arm that seemed to follow a large protruding vein. I thought it was from an old accident injury that severed part of my little finger and broke all my fingers at the top joints. One of my doctors told me it was from my nerves in my neck were being tangled (?) with my neck bones C6(?) . Now the tingling is joined with an ache in my right shoulder. Recently (the last couple of weeks) I get very dizzy that cause me to walk unsteady (as if I was drunk). Is this caused by my neuropathy?

Jump to this post

Hi @hoeewaa, I know it can be troublesome to feel dizzy and unsteady when trying to walk. Have you discussed the new symptoms with your doctor?

REPLY
1 reply
johnmacc | @johnmacc | Oct 1, 2022
In reply to @exitframeleft "Non-Length Dependent SFN- who else has this diagnosis? Recently DX with this definitively from skin biopsy...." + (show)
@exitframeleft

Non-Length Dependent SFN- who else has this diagnosis?

Recently DX with this definitively from skin biopsy. Of course as everyone who has gone through the lengthy diagnosis process knows , they don’t know a whole lot about this specific type of neuropathy. At the end, it is still just “treat the symptoms and hope it doesn’t progress. 2 possible causes for me: B6 toxicity from multivitamin with 3x the amount needed that I haven’t taken for 2 months and the other one that it could also be: autoimmune, specifically 35 years of Crohn’s disease. Neuro still doing testing to rule out other underlying causes. Current symptoms for me are in the feet: tingling, numbness, burning and pain. Odd and unsettling combo that I feel every minute I’m awake. On 2700mg gabapentin and it helps a bit, but you basically just have to push throuugh. I’ve had symptoms for 2 years and I’m fortunate I live near the Texas Medical Center and have lucked into having a neuro who specializes in SFN.

Jump to this post

Hi there. I'm on 3300 mg gaba spread out 8 am noon 4 pm and 8 pm. Helps about 50 %ish for last 3 yrs. Just tapered down from 3600. Tried 3000 for 6 weeks but too much pain. When do you take your gaba?

REPLY
rnlorena | @rnlorena | Oct 1, 2022
In reply to @exitframeleft "Non-Length Dependent SFN- who else has this diagnosis? Recently DX with this definitively from skin biopsy...." + (show)
@exitframeleft

Non-Length Dependent SFN- who else has this diagnosis?

Recently DX with this definitively from skin biopsy. Of course as everyone who has gone through the lengthy diagnosis process knows , they don’t know a whole lot about this specific type of neuropathy. At the end, it is still just “treat the symptoms and hope it doesn’t progress. 2 possible causes for me: B6 toxicity from multivitamin with 3x the amount needed that I haven’t taken for 2 months and the other one that it could also be: autoimmune, specifically 35 years of Crohn’s disease. Neuro still doing testing to rule out other underlying causes. Current symptoms for me are in the feet: tingling, numbness, burning and pain. Odd and unsettling combo that I feel every minute I’m awake. On 2700mg gabapentin and it helps a bit, but you basically just have to push throuugh. I’ve had symptoms for 2 years and I’m fortunate I live near the Texas Medical Center and have lucked into having a neuro who specializes in SFN.

Jump to this post

@exitframeleft. I have been to the Houston area many times because I had family living there. I have a brother who lives in Boerne Texas outside of San Antonio. I am gonna check out your Dr. to see if I can get an appt. I just want a fresh face. I want as much information as I can get. I did check my insurance about second opinions and they said yes. Its about a 9 hour drive for me but I have done it many times and I like driving so that's good. I wouldn't mind finding a cardiologist that is familiar with SNF but I am doubting that, but you never know. I don't think it is coincidence that this has happened. I think it may be connected to the shot but I am not sure if they have a way of telling that. I read somewhere that people were sending their blood to labs overseas to check it. I have a syrinx in my neck and it is tiny and the neuro did a MRI of my head and neck but they didn't use contrast. Syrinx is a fluid filled area that can be big or small in your spinal cord. It can spread and it can be more than one fluid filled area and it can cause major problems for people. Of course those are not suppose to be there. They mostly find them when people are in car wrecks and they do scans to see if anything is wrong. I have lots of questions with one of them being--What if you were diagnosed before SNF with things that can affect you if you have SNF. I am curious and want to know things. I took care of a lot of diabetics who have had neuropathy. But in my entire nursing career never heard about SNF. Another question would be since mine started I have had pinpricks that come and go whenever they choose and I have a burning sensation in my left hand that also comes and goes. I also have the heart issue. PSVT. I have since been diagnosed with diverticulosis and the Dr thinks I also have IBS. I was anemic last year and I am again this year. I took the medication for that and my blood was good until March of this year and again I am anemic. I go to the Dr. the end of October and I will see my bloodwork again. If I am still anemic I am getting rid of my doctor. I simply told her that I took my iron last year with the other Dr. seven days a week and this Dr. told me to take it 3 days a week. When I brought that up she said It doesn't matter if you take 7 or 3. I thought I was gonna lose it. That makes no sense to me. I started taking it everyday. So if I am anemic I will be going to a blood specialist to find out why. In March it will be one year since I had the pinpricks. I don't think it is a coincidence that the pinpricks started after the shots then the heart issue.
You said you have Crohn's. I have had other gastro issues and I wonder if that could be the cause.

REPLY
1 reply
exitframeleft | @exitframeleft | Oct 1, 2022
In reply to @rnlorena "@exitframeleft. I have been to the Houston area many times because I had family living there...." + (show)
@rnlorena

@exitframeleft. I have been to the Houston area many times because I had family living there. I have a brother who lives in Boerne Texas outside of San Antonio. I am gonna check out your Dr. to see if I can get an appt. I just want a fresh face. I want as much information as I can get. I did check my insurance about second opinions and they said yes. Its about a 9 hour drive for me but I have done it many times and I like driving so that's good. I wouldn't mind finding a cardiologist that is familiar with SNF but I am doubting that, but you never know. I don't think it is coincidence that this has happened. I think it may be connected to the shot but I am not sure if they have a way of telling that. I read somewhere that people were sending their blood to labs overseas to check it. I have a syrinx in my neck and it is tiny and the neuro did a MRI of my head and neck but they didn't use contrast. Syrinx is a fluid filled area that can be big or small in your spinal cord. It can spread and it can be more than one fluid filled area and it can cause major problems for people. Of course those are not suppose to be there. They mostly find them when people are in car wrecks and they do scans to see if anything is wrong. I have lots of questions with one of them being--What if you were diagnosed before SNF with things that can affect you if you have SNF. I am curious and want to know things. I took care of a lot of diabetics who have had neuropathy. But in my entire nursing career never heard about SNF. Another question would be since mine started I have had pinpricks that come and go whenever they choose and I have a burning sensation in my left hand that also comes and goes. I also have the heart issue. PSVT. I have since been diagnosed with diverticulosis and the Dr thinks I also have IBS. I was anemic last year and I am again this year. I took the medication for that and my blood was good until March of this year and again I am anemic. I go to the Dr. the end of October and I will see my bloodwork again. If I am still anemic I am getting rid of my doctor. I simply told her that I took my iron last year with the other Dr. seven days a week and this Dr. told me to take it 3 days a week. When I brought that up she said It doesn't matter if you take 7 or 3. I thought I was gonna lose it. That makes no sense to me. I started taking it everyday. So if I am anemic I will be going to a blood specialist to find out why. In March it will be one year since I had the pinpricks. I don't think it is a coincidence that the pinpricks started after the shots then the heart issue.
You said you have Crohn's. I have had other gastro issues and I wonder if that could be the cause.

Jump to this post

@rnlorena Your intestinal issues may very well be tied into it. I hope you can get answers that provide guidance and relief.

REPLY
hoeewaa | @hoeewaa | Oct 1, 2022
In reply to @johnbishop "Hi @hoeewaa, I know it can be troublesome to feel dizzy and unsteady when trying to..." + (show)
@johnbishop

Hi @hoeewaa, I know it can be troublesome to feel dizzy and unsteady when trying to walk. Have you discussed the new symptoms with your doctor?

Jump to this post

Not at this time , I have an appointment coming up with a MD. Problem was all of my doctors retired about the same time!

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