1. < Neuropathy

Small fiber neuropathy?

Posted by Goaway @nemo1, Feb 16 9:00pm

I never had a biopsy to dx it. I’m wondering if I have the biopsy does it make a difference in the therapies? A year ago I was dx’d with severe chronic nerve damage in lumbar and cspine: polyradiculopathy.

I have severe pain and spasms in lumbosacral back, legs and feet since 2021.

In the summer of 2023 I started (an continue having) get spasms in the trapezeous muscles on the right.

I’m currently flaring with bad pains to both shoulder that is crippling then after a long while it disappears. I developed lightning like pains to the bottoms of my feet and toes. The only thing that seemingly helps the surface pain is the lidocaine cream I apply. So far…

The neuromuscular doctor said last year no long fiber neuropathy per the nerve conduction study. She said I’d need a biopsy to determine if i have sfn.

An old nerve doctor said I had demyelination in left leg she thought secondary to diabetes. WEll, the diabetes hasnt climbed to damaging enough numbers to put me in flair much less cause the demyelination.

The foot dr last week gave referral for feet, for neuropathy and balance. So this confuses me. It all does.

I’d like to know if SNF can move around the body and cause the tingling in forarms and fingers and can the pain in SNF affect the very surface of the skin?

If someone can make sense of what Ive written I’d appreciate any help insight or feedback.

I have not received a diagnosis regarding the polyradiculopathy. I’m going to press the doctors for answers now because it’s really out of control.

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

Goaway | @nemo1 | Feb 18 5:27am

My problems started 6 months after the covid shots. As well as a fall. Plus, when I went for the third shot developed very high pulse rate most of that day. I almost went to the hospital. My guy had a bad reaction to his as well.

I have diabetes. Numbers have been under control for years. Not sure why this happened.

My nm dr put me on anti inflammatory diet/regimen (not sustainable or realistic). I see her again early next month. Hope she has better answers for me. This is too much already.

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Goaway | @nemo1 | Feb 18 5:41am

Does anyone know if demyelination happens and then a person develops the neuropathy?

I ask because the first dr/nerve study showed demyelination she wrote “presumably” from diabetes.

The second doctor (I changed hospital affiliations) nerve study on one arm (cubital to something don’t recall) showed neuropathy but no large fiber neuropathy in legs. Not sure what the difference is between small and large fiber neuropathy is. I thought symptoms were the same.

She did say, to dx the sfn, id need a biopsy. I will see if she would do it.

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1 reply
NJ Ed | @njed | Feb 18 7:01am
In reply to @dbeshears1 "There are so many paths the various Neuropathies take. For me, my desire to get as..." + (show)
@dbeshears1

There are so many paths the various Neuropathies take. For me, my desire to get as much specific information on the exact type or possible reasons is to help connect most with people are on the most similar path as my own. This perhaps helps me prioritize things to try to help me stabilize and improve my mobility. There are so many different symptoms and so many things to try, I like narrowing down the list by borrowing from the successes others have already had and try those ideas first. I also like borrowing from others most like me on what things I might want to avoid.

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Debbie - You hit the nail on the head....again. Like you, I've tried to learn from others involved in Connect what might work, what might not in coping with PN. I have given a lot of thought lately as to the various symptoms we hear about on Connect and who knows how many unknown causes. No wonder PN is a mystery. I've had 3 docs give me 3 different possible causes for PN. Mayo said we don't know, and I have decided to live with their diagnosis. Keep learning and keep moving. For now, it's the best we can do. Ed

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daj3333 | @daj3333 | Feb 18 8:45am
In reply to @caban "I developed nerve damage in my feet as a result of my high immunity kicking in..." + (show)
@caban

I developed nerve damage in my feet as a result of my high immunity kicking in to protect my feet from the foot operation I had to remove a neuroma. My immune system went in to protect my feet but instead attacked the nerves in my feet. Hence the serious damage. Fortunately it can be reversed. Doesn’t happen often apparently. USA has far more advanced methods of working out what nerve damage has occurred than where I live so it was in the USA that type of damage was assessed and then treatment could be started. I’m very fortunate.

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What treatment are you starting?

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1 reply
Goaway | @nemo1 | Feb 18 9:51am
In reply to @dbeshears1 "There are so many paths the various Neuropathies take. For me, my desire to get as..." + (show)
@dbeshears1

There are so many paths the various Neuropathies take. For me, my desire to get as much specific information on the exact type or possible reasons is to help connect most with people are on the most similar path as my own. This perhaps helps me prioritize things to try to help me stabilize and improve my mobility. There are so many different symptoms and so many things to try, I like narrowing down the list by borrowing from the successes others have already had and try those ideas first. I also like borrowing from others most like me on what things I might want to avoid.

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what you said makes perfect sense. I didn’t know before reading your post there are different varieties of neuropathy. That is probably why it is confusing. Feel better.

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retired123 | @retired123 | Feb 18 10:19am
In reply to @caban "I developed nerve damage in my feet as a result of my high immunity kicking in..." + (show)
@caban

I developed nerve damage in my feet as a result of my high immunity kicking in to protect my feet from the foot operation I had to remove a neuroma. My immune system went in to protect my feet but instead attacked the nerves in my feet. Hence the serious damage. Fortunately it can be reversed. Doesn’t happen often apparently. USA has far more advanced methods of working out what nerve damage has occurred than where I live so it was in the USA that type of damage was assessed and then treatment could be started. I’m very fortunate.

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What treatment will you be starting? I live in the USA and my many specialists can offer no help other than drugs that haven't worked and cause worse side effects. I am interested in what you are going to try. Thank you.

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2 replies
artemis1886 | @artemis1886 | Feb 18 10:19am
In reply to @nemo1 "Thank you Art. When it affects the heart and blood pressure, do the two happen simultaneously?..." + (show)
@nemo1

Thank you Art. When it affects the heart and blood pressure, do the two happen simultaneously? Or can you have low 50;s. To 60’shr (from high heart rate 90’s for a year and then have the blood pressure go to 107/75 where it is usually higher. Not saying there is a link but I don’t understand why there is a change. When do you tell the neurologist about a strange heart rate? I am on blood pressure meds, same ones for long time. Don’t want to overthink it but don’t want to ignore what might be important signs. Thank you.

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My BP was originally 120/65 or sometimes 125/60.Then starting thin November overnight jumped 159/99. Why itt happened that fast I don’t know. I guess from 2021 to now it gave my body a chance to adjust to the arrhythmias and boom new problem. They could tell on my echocardiogram in November that my arrhythmias had gotten worse because now my left ventricle in getting enlarged. I have had pericardial effusion since 2004. That did not bother me. We believe I truly got the neuropathy when I got bacterial spinal meningitis. I was in the hospital two weeks first week unconscious, then they sent me home with a PICC (a IV placed permanently in your upper arm it’s a surgery) line for three months and then oral antibiotics for another three months.

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1 reply
artemis1886 | @artemis1886 | Feb 18 10:35am
In reply to @retired123 "I have been told by several doctors that SFN is life altering but not life threatening..." + (show)
@retired123

I have been told by several doctors that SFN is life altering but not life threatening and have read pretty much the same. May I ask where you got your information? Thanks.

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The electrophsiologist and a research neurologist that I went to Boston to see. Once it’s in your heart it makes life difficult. They try to control. It with meds. They don’t tell you how bad it can get until it happens. That’s what frustrating. They told me that I would die in my sleep. It is called CAN (cardiac autonomic neuropathy). I am an RN and everyone says it can’t kill you but I never thought about the heart and what happens when the nerves start screwing up. So I started reading the medical journal of cardiology because my first reaction is I told the doctor he was lying. He knew that I had been through RN school so he gave me a bunch of articles to read. I decided instead to look it up and do it for continuing education credits. Was not happy. Then I had to go back and apologize after the biopsies for SFN came back positive. That’s how it progressed.

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1 reply
Goaway | @nemo1 | Feb 18 11:31am
In reply to @artemis1886 "My BP was originally 120/65 or sometimes 125/60.Then starting thin November overnight jumped 159/99. Why itt..." + (show)
@artemis1886

My BP was originally 120/65 or sometimes 125/60.Then starting thin November overnight jumped 159/99. Why itt happened that fast I don’t know. I guess from 2021 to now it gave my body a chance to adjust to the arrhythmias and boom new problem. They could tell on my echocardiogram in November that my arrhythmias had gotten worse because now my left ventricle in getting enlarged. I have had pericardial effusion since 2004. That did not bother me. We believe I truly got the neuropathy when I got bacterial spinal meningitis. I was in the hospital two weeks first week unconscious, then they sent me home with a PICC (a IV placed permanently in your upper arm it’s a surgery) line for three months and then oral antibiotics for another three months.

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Thank you Art and I am sorry to ask you something that is so distressing. I didn’t realize in how you would need to reply when asking….

If you don’t mind me asking, did you go through periods of low heart rate (for mine it went into the mid to low 50’s (out of know where for a few weeks now it is mid to low 60’s resting and goes higher during activity but then at times it dips when I don't realize it), however I was having periods of shortness of breath a hospital doctor attributed to worsening sleep apnea. (My Normal resting HR would be 90+ with meds) while you were having blood pressure fluctuations?

I had an echo and stress test that were ok about a year ago. If it’s okay to ask, how long between echo’s did it take SFN damage to manifest and then show up on echo?

There are times I become short of breath, have to take off the cpap (nasal one) to take a breath. I do “square breathing” to calm myself, because it is stressful to not catch your breath it takes a little bit to get to rest from that. I don’t now if that is what happened to you before.

I hope i am making sense. My head is going in different directions.

🙏🏻 Thank you.

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retired123 | @retired123 | Feb 18 11:36am
In reply to @artemis1886 "The electrophsiologist and a research neurologist that I went to Boston to see. Once it’s in..." + (show)
@artemis1886

The electrophsiologist and a research neurologist that I went to Boston to see. Once it’s in your heart it makes life difficult. They try to control. It with meds. They don’t tell you how bad it can get until it happens. That’s what frustrating. They told me that I would die in my sleep. It is called CAN (cardiac autonomic neuropathy). I am an RN and everyone says it can’t kill you but I never thought about the heart and what happens when the nerves start screwing up. So I started reading the medical journal of cardiology because my first reaction is I told the doctor he was lying. He knew that I had been through RN school so he gave me a bunch of articles to read. I decided instead to look it up and do it for continuing education credits. Was not happy. Then I had to go back and apologize after the biopsies for SFN came back positive. That’s how it progressed.

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Well, that's not happy news. We all have to die of something and in my sleep is my preference. It's the "until then" that is the misery. I think my SFN was triggered by unavoidable surgery.

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