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.

@caban

Have a nerve biopsy as this will tell the doctor what you have. USA do it through the blood sample or skin biopsy I believe which is more accurate than an MRI. My blood sample showed damage to my sensory nerve panel and then the specialist was able to help me with treatment to repair the foot nerves. I hope this helps you decide. Ask lots of questions to the doctors. I did.

Jump to this post

I will ask for the nerve biopsy. You mention by blood. May I ask what specific lab test you are referring to? I am in USA. I did not know repairing foot nerves was possible..! Do they test the skin of the feet or another area? I’m diabetic and don’t heal easily and am wondering if the biopsy heals well in diabetics. Even if small.

REPLY

I had a blood biopsy and it showed damage to my sensory neuropathy panel. Test was done at Washington University and requested by my neurologist in Sydney. We don’t have that type of test available in Australia. Showed damage and then I started appropriate treatment to help repair nerves. My nerves weren’t cut but badly damaged by my immune system. My nerves have started to recover but it takes a while. Not sure about broken or cut nerves. I have a very clever and wonderful neurologist.

REPLY
@artscaping

Good evening @ebero. Thank you for the reminder to eliminate processed sugar. I have noticed recently that more items like fruit juices are available with "NO SUGAR". So now I look for those options.
Chris

Jump to this post

True! But if you read labels, many of the ‘no sugar’ items (I was looking for catsup yesterday) substitute stevia or other sweeteners for sugar. I see the most improvement with the least sweeteners of any kind. I use a spoonful of maple syrup or honey when I really want a bit of sweetening in something, like on a bowl of oatmeal.

REPLY
@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

Have you had your B vitamin levels checked? In the process and found out my thiamine was low and folic acid and B6 are quite elevated. Apparently these vitamins have a lot to due with neuropathy symptoms.

REPLY

Up to 50 per cent of all small fiber idiopathic neuropathies are ultimately determined to have some glucose involvement. That doesn't mean this is the cause of your sfn, but getting a 2 hour glucose tolerance test is mandatory; some believe a new but not yet widely accepted one hour test is actually superior. HB1ac misses far too many cases of pre-diabetes and early diabetes and should not be relied upon. Given your spinal issues (which I share) you have to consider those as a source, though they may not be the real culprit. Do you have compressed, bulging or herniated discs in both your lumbar and cervical spine? Did the PN start in your toes, spread later through the feet and up the calf with subsequent paresthesias in the hands? Did it manifest symmetrically in both feet, ankles, calves, hands? If your PN followed that pattern it is less likely to be of spinal nerve compression origin, though not entirely out of the question. Yes, skin biopsies and nerve ultrasounds, in particular, can be helpful in differentiating the different types (etiologies) of PN, segregating, for example, those of auto-immune origin, malign origin, toxic origin, etc. Well worth getting in your situation. You should also get blood tests for monoclonal protein assessment, using the SPEP, IFE and serum free light chain tests. Yes, treatments can vary depending upon etiology, but there are researchers who make a persuasive argument that at base the proximal cause of almost all neuropathies are mitochondrial/endothelial dysfunctions that reduce and disrupt axonal energy. Some of this, I believe, is linked to small vessel disease that increases with aging, resulting in systemic disease that, among other things, causes axonal degeneration, demyelination, etc. The current accepted standard of care for this is not very effective, unfortunately, overall, when it comes to idiopathic (unexplained) PN, but such substances as alpha lipoic acid, methylfolate, acetyl L carnitine, propionyl L carnitine, B12, D3, etc. have shown some efficacy. There are a few promising things in the drug and device pipeline that may enter the market in the next year to next few years. For anyone with spinal issues that are a suspected or demonstrated cause, exercise, diet, physical therapy are vital, and acupuncture and low-level laser treatments may be helpful. A new magnetic treatment is being used at a few medical centers with early promising results in alleviating PN pain, though whether this modality addresses underlying causes remains to be demonstrated.

REPLY
@proteusx

Up to 50 per cent of all small fiber idiopathic neuropathies are ultimately determined to have some glucose involvement. That doesn't mean this is the cause of your sfn, but getting a 2 hour glucose tolerance test is mandatory; some believe a new but not yet widely accepted one hour test is actually superior. HB1ac misses far too many cases of pre-diabetes and early diabetes and should not be relied upon. Given your spinal issues (which I share) you have to consider those as a source, though they may not be the real culprit. Do you have compressed, bulging or herniated discs in both your lumbar and cervical spine? Did the PN start in your toes, spread later through the feet and up the calf with subsequent paresthesias in the hands? Did it manifest symmetrically in both feet, ankles, calves, hands? If your PN followed that pattern it is less likely to be of spinal nerve compression origin, though not entirely out of the question. Yes, skin biopsies and nerve ultrasounds, in particular, can be helpful in differentiating the different types (etiologies) of PN, segregating, for example, those of auto-immune origin, malign origin, toxic origin, etc. Well worth getting in your situation. You should also get blood tests for monoclonal protein assessment, using the SPEP, IFE and serum free light chain tests. Yes, treatments can vary depending upon etiology, but there are researchers who make a persuasive argument that at base the proximal cause of almost all neuropathies are mitochondrial/endothelial dysfunctions that reduce and disrupt axonal energy. Some of this, I believe, is linked to small vessel disease that increases with aging, resulting in systemic disease that, among other things, causes axonal degeneration, demyelination, etc. The current accepted standard of care for this is not very effective, unfortunately, overall, when it comes to idiopathic (unexplained) PN, but such substances as alpha lipoic acid, methylfolate, acetyl L carnitine, propionyl L carnitine, B12, D3, etc. have shown some efficacy. There are a few promising things in the drug and device pipeline that may enter the market in the next year to next few years. For anyone with spinal issues that are a suspected or demonstrated cause, exercise, diet, physical therapy are vital, and acupuncture and low-level laser treatments may be helpful. A new magnetic treatment is being used at a few medical centers with early promising results in alleviating PN pain, though whether this modality addresses underlying causes remains to be demonstrated.

Jump to this post

sorry for the typo; I meant HbA1c

REPLY

you make no mention of a spinal MRI? If this hasn't been done, your docs are negligent. It sounds to me like your pattern of pain, paresthesia has been non-symmetrical, affecting different areas of the body at different times, coming and going, in the presence of "severe pain and spasms in the back." That at least suggests a spinal origin for much of the problem, though this might be called into question in the absence of any cervical or thoracic spinal degeneration to explain your shoulder, arm, hand neuropathies.

REPLY
@ebero

True! But if you read labels, many of the ‘no sugar’ items (I was looking for catsup yesterday) substitute stevia or other sweeteners for sugar. I see the most improvement with the least sweeteners of any kind. I use a spoonful of maple syrup or honey when I really want a bit of sweetening in something, like on a bowl of oatmeal.

Jump to this post

Oh my goodness. I had forgotten about sweeteners. And although my life partner uses maple syrup or honey....l never have. Thank you so much for this important information. Hopefully, I won't forget it this time.

May you have happiness and the causes of happiness.
Chris

REPLY
@proteusx

Up to 50 per cent of all small fiber idiopathic neuropathies are ultimately determined to have some glucose involvement. That doesn't mean this is the cause of your sfn, but getting a 2 hour glucose tolerance test is mandatory; some believe a new but not yet widely accepted one hour test is actually superior. HB1ac misses far too many cases of pre-diabetes and early diabetes and should not be relied upon. Given your spinal issues (which I share) you have to consider those as a source, though they may not be the real culprit. Do you have compressed, bulging or herniated discs in both your lumbar and cervical spine? Did the PN start in your toes, spread later through the feet and up the calf with subsequent paresthesias in the hands? Did it manifest symmetrically in both feet, ankles, calves, hands? If your PN followed that pattern it is less likely to be of spinal nerve compression origin, though not entirely out of the question. Yes, skin biopsies and nerve ultrasounds, in particular, can be helpful in differentiating the different types (etiologies) of PN, segregating, for example, those of auto-immune origin, malign origin, toxic origin, etc. Well worth getting in your situation. You should also get blood tests for monoclonal protein assessment, using the SPEP, IFE and serum free light chain tests. Yes, treatments can vary depending upon etiology, but there are researchers who make a persuasive argument that at base the proximal cause of almost all neuropathies are mitochondrial/endothelial dysfunctions that reduce and disrupt axonal energy. Some of this, I believe, is linked to small vessel disease that increases with aging, resulting in systemic disease that, among other things, causes axonal degeneration, demyelination, etc. The current accepted standard of care for this is not very effective, unfortunately, overall, when it comes to idiopathic (unexplained) PN, but such substances as alpha lipoic acid, methylfolate, acetyl L carnitine, propionyl L carnitine, B12, D3, etc. have shown some efficacy. There are a few promising things in the drug and device pipeline that may enter the market in the next year to next few years. For anyone with spinal issues that are a suspected or demonstrated cause, exercise, diet, physical therapy are vital, and acupuncture and low-level laser treatments may be helpful. A new magnetic treatment is being used at a few medical centers with early promising results in alleviating PN pain, though whether this modality addresses underlying causes remains to be demonstrated.

Jump to this post

Will need to reread your posts over to process. Excellent information. I did not realize how symptoms present, the order of makes a difference…among other issues. Many thanks.

REPLY
@caban

I had a blood biopsy and it showed damage to my sensory neuropathy panel. Test was done at Washington University and requested by my neurologist in Sydney. We don’t have that type of test available in Australia. Showed damage and then I started appropriate treatment to help repair nerves. My nerves weren’t cut but badly damaged by my immune system. My nerves have started to recover but it takes a while. Not sure about broken or cut nerves. I have a very clever and wonderful neurologist.

Jump to this post

Am seeing another nm doctor in June for an opinion. If my current doctor won’t give me enough information I’m going to follow through with the June appointment. I was referred to the new doc by my PT doctor. Even she thought “it” is more…I asked her if she’s had patients like me with my problems. She asked me if I’d heard of CIDP. I told her yes. That it is one possible cause of my situation : the polyradiculopathy’s. Then there are assorted causes to the CIDP. Not yet explored. I wonder if CIDP is genetic. An older aunt developed it months following an immunization like me. Curious to me. Anyway…like many I am seeking answers and remedies to specific issues. Thank you for your informative posts! 💜

REPLY
Please sign in or register to post a reply.