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 17 7:17pm
In reply to @artemis1886 "SFN-affects the organ’s gastroparesis of the stomach, loss of bladder control,, heart either beats too fast..." + (show)
@artemis1886

SFN-affects the organ’s gastroparesis of the stomach, loss of bladder control,, heart either beats too fast or too slow and the doctors have problems controlling blood pressure. One problem for females you no longer feel the female sex organs. Then it affects the pancreas and thyroid. Once it’s in the heart the electrophsiologist gives you approximately seven years left to live. The treatment is IVIG therapy takes at least six months to a year to notice the difference. Once you go on IVIG therapy you remain on it for life. You go off it will progress really fast. It starts working immediately but most people get frustrated because they can’t tell the difference. I am trying to fight to get on it. I have the heart problems, stomach and bladder. Plus chocking problems and it affects the lungs.
I now make myself go to the bathroom every hour.. After having accidents in public it was embarrassing. I activate the timer on my cellphone to remind myself when running around.

Jump to this post

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.

REPLY
3 replies
ebero | @ebero | Feb 17 7:31pm
In reply to @retired123 "For those that have SFN, have you tried a spinal stimulator implant and did it help?..." + (show)
@retired123

For those that have SFN, have you tried a spinal stimulator implant and did it help? What have you done that helped with foot tingling? DMSO? CBD? Anything? Thank you!

Jump to this post

One thing that immediately reduced my foot and hand tingling, and the burning sensation, was eliminating all processed sugar from my diet. You could try that for a day or two and see if it helps. I eat fruit, but not fruit juices or items with lots of natural sugar.

REPLY
2 replies
retired123 | @retired123 | Feb 17 7:35pm
In reply to @nemo1 "What is DMSO? How does a spinal stimulator help?" + (show)
@nemo1

What is DMSO? How does a spinal stimulator help?

Jump to this post

Here is a DMSO link. //www.healthline.com/health/what-is-dmso#What-is-DMSO? As to the spinal stimulator, that is my question, too. My doctor wants me try it so I'm looking for experiences to help me decide.

REPLY
retired123 | @retired123 | Feb 17 7:43pm
In reply to @artemis1886 "SFN-affects the organ’s gastroparesis of the stomach, loss of bladder control,, heart either beats too fast..." + (show)
@artemis1886

SFN-affects the organ’s gastroparesis of the stomach, loss of bladder control,, heart either beats too fast or too slow and the doctors have problems controlling blood pressure. One problem for females you no longer feel the female sex organs. Then it affects the pancreas and thyroid. Once it’s in the heart the electrophsiologist gives you approximately seven years left to live. The treatment is IVIG therapy takes at least six months to a year to notice the difference. Once you go on IVIG therapy you remain on it for life. You go off it will progress really fast. It starts working immediately but most people get frustrated because they can’t tell the difference. I am trying to fight to get on it. I have the heart problems, stomach and bladder. Plus chocking problems and it affects the lungs.
I now make myself go to the bathroom every hour.. After having accidents in public it was embarrassing. I activate the timer on my cellphone to remind myself when running around.

Jump to this post

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.

REPLY
1 reply
retired123 | @retired123 | Feb 17 7:46pm
In reply to @ebero "One thing that immediately reduced my foot and hand tingling, and the burning sensation, was eliminating..." + (show)
@ebero

One thing that immediately reduced my foot and hand tingling, and the burning sensation, was eliminating all processed sugar from my diet. You could try that for a day or two and see if it helps. I eat fruit, but not fruit juices or items with lots of natural sugar.

Jump to this post

Is your SFN from diabetes? My labs come back negative for diabetes. In the 5+ years I 've had SFN no cause can be found.

REPLY
2 replies
artemis1886 | @artemis1886 | Feb 17 8:16pm
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.

Jump to this post

I hard arrhythmias first.. Scared me. I have a son with congenital heart disease that almost died from tachycardia. My heart started jumping in my sleep. It would stop and when it started back up it would jump and wake me up. I was afraid to go back to sleep. I had a one month holter monitor test showed the bradycardia and tachycardia. I was sent to a electrophysiologist that diagnosed with cardiac autonomic neuropathy. Being a RN I told him he was lying. I went to the neurologist and had the biopsies. Within the
last six months my BP has been high. 159/99. The arrhythmias have started back up so the cardiologist and electrophysiologist decided to do another one month holter monitor on me. We will see what happens from here. The BP medication made me nauseous and throwing up so we stopped it.

REPLY
2 replies
ebero | @ebero | Feb 17 8:17pm
In reply to @retired123 "Is your SFN from diabetes? My labs come back negative for diabetes. In the 5+ years..." + (show)
@retired123

Is your SFN from diabetes? My labs come back negative for diabetes. In the 5+ years I 've had SFN no cause can be found.

Jump to this post

No diabetes. Right now it’s idiopathic sfn. Sugar is apparently a trigger for inflammation, causing symptoms….

REPLY
artemis1886 | @artemis1886 | Feb 17 8:19pm
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.

Jump to this post

Before it went high it was always low.

REPLY
Goaway | @nemo1 | Feb 17 8:53pm
In reply to @artemis1886 "I hard arrhythmias first.. Scared me. I have a son with congenital heart disease that almost..." + (show)
@artemis1886

I hard arrhythmias first.. Scared me. I have a son with congenital heart disease that almost died from tachycardia. My heart started jumping in my sleep. It would stop and when it started back up it would jump and wake me up. I was afraid to go back to sleep. I had a one month holter monitor test showed the bradycardia and tachycardia. I was sent to a electrophysiologist that diagnosed with cardiac autonomic neuropathy. Being a RN I told him he was lying. I went to the neurologist and had the biopsies. Within the
last six months my BP has been high. 159/99. The arrhythmias have started back up so the cardiologist and electrophysiologist decided to do another one month holter monitor on me. We will see what happens from here. The BP medication made me nauseous and throwing up so we stopped it.

Jump to this post

I’m so sorry for what you’re enduring. I hope they find answers that can help you. 🤗

REPLY
caban | @caban | Feb 18 4:45am
In reply to @retired123 "Is your SFN from diabetes? My labs come back negative for diabetes. In the 5+ years..." + (show)
@retired123

Is your SFN from diabetes? My labs come back negative for diabetes. In the 5+ years I 've had SFN no cause can be found.

Jump to this post

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.

REPLY
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