Autoimmune illness and small fiber neuropathy

Posted by Machak @machak, Jul 15, 2021

Greetings,

I was diagnosed over a long period of searching for reasons for a wide range of symptoms with Lupus/Sjogren’s Syndrome, and Small Fiber Neuropahy. My question was this: Can anyone point to some good resources for sfnp and autoimmune diseases? I am a doctoral health scientist, but very little is showing up in my usual resources.

Briefly, I started out with an elevated right hemidiaphram that went away before the sniff test, but showed up more and more frequently until they were able to see it paralyzed/paresis on the sniff test. This can last from days to weeks to up to 5months one year, but it comes bask (so far). Lung capacity can drop from over 5L in the inspirometer to 3.5L with no warning. In trying to find answers hey did a skin biopsy which “was indicative of small fiber neuropathy”, but no clue as to why. Eventually as symptoms build up through the years (difficulty swallowing, heart palpitations, temperature regulation, dry eyes, dry mouth, prickle/burning pains in various locations, joint sinovitis, to name a few) they came down to Lupus and Sjögren’s syndrome. Symptoms have slowly progressed, getting worse year by year until I had to retire early from CDC. After this long journey, I am still looking for how all of these things impact each other and “work together”, but my doctors all look at their one piece of the puzzle. I appreciate any leads you could share.

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

@total99

I went to a neurologist, who did a nerve conduction test, verified my chief complaint , small fiber neuropathy, and said only that I should see a rumatologist. NOT very satisfying!!!!

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@total99 you sound very frustrated! But, you have seen a neurologist and he/she has confirmed small fiber neuropathy. The next step IS a rheumatologist. They know more about autoimmune diseases than most doctors. Find a really good rheumatologist in your area and let them help you.
https://rarediseases.info.nih.gov/guides/pages/25/how-to-find-a-disease-specialist
This information from the rare diseases assoc should help you
Will you stay in touch with me?

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@total99

I went to a neurologist, who did a nerve conduction test, verified my chief complaint , small fiber neuropathy, and said only that I should see a rumatologist. NOT very satisfying!!!!

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My doc doesn't know where to do a biopsy to check for SFN (pain mostly chest, throat, abdominal and other areas) but doesn't rule it out. When I say it is likely autoimmune cause due to elevated pr3 and skin manifestations ( though no one will diagnose vasculitis) he says "that is rheumatology " But rheumatology won't do extensive antibody testing and won't address neurological part of the condition ( yet these two docs are in the same health system and building)

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Sounds similar to me, debilitating burning pain everywhere and GI slow motility, skin rashes and red dots, elevated pr3 and polyclonal gammopathy but no vasculitis diagnosis) and each specialty just looks at their part. No one works together when these things are multidisciplinary and cannot be addressed in a vacuum.

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@sashasamantha

Sounds similar to me, debilitating burning pain everywhere and GI slow motility, skin rashes and red dots, elevated pr3 and polyclonal gammopathy but no vasculitis diagnosis) and each specialty just looks at their part. No one works together when these things are multidisciplinary and cannot be addressed in a vacuum.

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@sashasamantha, @becsbuddy shared a video in aother discussion from the Autoimmune Association (https://autoimmune.org/). that you may find helpful.

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Hi, I am in the middle of the process of dealing with peripheral neuropathy. It presents mostly in my feet and toes and in the last few months in my fingers and hands.

I have had an EMG test, which found one issue with a nerve in my lower back – mild chronic left L5 radiculopathy – but doesn't explain it all. In fact, I don't experience any shooting pains down my legs. But, lower back-wise, there is a burning, sparking pain around my waist and upper buttocks. Gabapentin has improved this and also the sensation of electrical shocks racing up and down my spine. Neurology is going to do some biopsies in February to check for (I think) protein buildup in the tiny nerves, or something like that. The investigative process seems to take a long time. I first went to my primary about foot pain back in February after the pain kept me from sleeping for 3 days.

In March, they did find my A1C at 6.8 but by June it was down to 5.5 and I'm told that my Diabetes really wasn't severe enough to cause the foot and finger pain. And the pain has increased since then. If it was the Diabetes, I'd expect the pain the stay the same since June or gradually get better.

I am surprised at how fast the pain has progressed. I was started on Gabapentin (300mg 3 x a day) back in Feb and am now up to 1200mg 3xday + 90mg Duloxetine 1xday. Do these things usually progress so fast? There was actually a hint of this going back about 15 years when the bottom of my feet started to feel like I was walking on stones. My doctor sent me to a podiatrist back then and they found nothing unusual and nothing more was done. It stopped me from being a runner anymore. That sensation stayed steady until the start of this year when it suddenly took off.

It was in March of this year that a Doctor (on an internet "get answers" type site) said I should see a Rheumatologist – and that was due to a question about degenerative lumbar, not the neuropathy. Since then, other people in my life who I consider well-informed have brought up Rheumatology when I tell them my symptoms. But, so far, all the Rheumatologists I have contacted want a referral. My primary isn't prepared to give me one, yet. How do I convince her? Or should I be asking my Neurologist?

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@axeddie

Hi, I am in the middle of the process of dealing with peripheral neuropathy. It presents mostly in my feet and toes and in the last few months in my fingers and hands.

I have had an EMG test, which found one issue with a nerve in my lower back – mild chronic left L5 radiculopathy – but doesn't explain it all. In fact, I don't experience any shooting pains down my legs. But, lower back-wise, there is a burning, sparking pain around my waist and upper buttocks. Gabapentin has improved this and also the sensation of electrical shocks racing up and down my spine. Neurology is going to do some biopsies in February to check for (I think) protein buildup in the tiny nerves, or something like that. The investigative process seems to take a long time. I first went to my primary about foot pain back in February after the pain kept me from sleeping for 3 days.

In March, they did find my A1C at 6.8 but by June it was down to 5.5 and I'm told that my Diabetes really wasn't severe enough to cause the foot and finger pain. And the pain has increased since then. If it was the Diabetes, I'd expect the pain the stay the same since June or gradually get better.

I am surprised at how fast the pain has progressed. I was started on Gabapentin (300mg 3 x a day) back in Feb and am now up to 1200mg 3xday + 90mg Duloxetine 1xday. Do these things usually progress so fast? There was actually a hint of this going back about 15 years when the bottom of my feet started to feel like I was walking on stones. My doctor sent me to a podiatrist back then and they found nothing unusual and nothing more was done. It stopped me from being a runner anymore. That sensation stayed steady until the start of this year when it suddenly took off.

It was in March of this year that a Doctor (on an internet "get answers" type site) said I should see a Rheumatologist – and that was due to a question about degenerative lumbar, not the neuropathy. Since then, other people in my life who I consider well-informed have brought up Rheumatology when I tell them my symptoms. But, so far, all the Rheumatologists I have contacted want a referral. My primary isn't prepared to give me one, yet. How do I convince her? Or should I be asking my Neurologist?

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Hello @axeddie, I see that you recently joined Connect and would like to welcome you. From your description it sounds like you don't have a specific diagnosis yet but have neuropathy symptoms. You mentioned you an EMG test, which found one issue with a nerve in your lower back – mild chronic left L5 radiculopathy. Here's a little more information on the topic you may find helpful.

— L5 radiculopathy caused by L5 nerve root entrapment by an L5-S1 anterior osteophyte: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4300884/
— Physical Therapy Guide to Lumbar Radiculopathy (Sciatica): https://www.choosept.com/guide/physical-therapy-guide-lumbar-radiculopathy-sciatica

I know you are looking for ways to convince your primary care doctor to provide a referral for a rheumatologist but have you thought about physical therapy as a possible treatment option to see if it would help?

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@johnbishop

Hello @axeddie, I see that you recently joined Connect and would like to welcome you. From your description it sounds like you don't have a specific diagnosis yet but have neuropathy symptoms. You mentioned you an EMG test, which found one issue with a nerve in your lower back – mild chronic left L5 radiculopathy. Here's a little more information on the topic you may find helpful.

— L5 radiculopathy caused by L5 nerve root entrapment by an L5-S1 anterior osteophyte: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4300884/
— Physical Therapy Guide to Lumbar Radiculopathy (Sciatica): https://www.choosept.com/guide/physical-therapy-guide-lumbar-radiculopathy-sciatica

I know you are looking for ways to convince your primary care doctor to provide a referral for a rheumatologist but have you thought about physical therapy as a possible treatment option to see if it would help?

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Hi John,

Thank you for the resources.

Your right, no one really knows what is up, yet, which is why I am anxious to get other types of doctors – like a Rheumatologist – looking into things.

Yes, I went through physical therapy earlier in the year because of the lower back and other spinal and back issues. I try to do my favorite exercises I learned from it every day.

Thanks again,
Eddie

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Can’t you just go see a rheumatologist even if you had to pay out of your pocket? I have done that before. Cigna has paid even though I do not have a referral. I did it to get a second and third opinion. I was desperate to find answers.

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@axeddie

Hi, I am in the middle of the process of dealing with peripheral neuropathy. It presents mostly in my feet and toes and in the last few months in my fingers and hands.

I have had an EMG test, which found one issue with a nerve in my lower back – mild chronic left L5 radiculopathy – but doesn't explain it all. In fact, I don't experience any shooting pains down my legs. But, lower back-wise, there is a burning, sparking pain around my waist and upper buttocks. Gabapentin has improved this and also the sensation of electrical shocks racing up and down my spine. Neurology is going to do some biopsies in February to check for (I think) protein buildup in the tiny nerves, or something like that. The investigative process seems to take a long time. I first went to my primary about foot pain back in February after the pain kept me from sleeping for 3 days.

In March, they did find my A1C at 6.8 but by June it was down to 5.5 and I'm told that my Diabetes really wasn't severe enough to cause the foot and finger pain. And the pain has increased since then. If it was the Diabetes, I'd expect the pain the stay the same since June or gradually get better.

I am surprised at how fast the pain has progressed. I was started on Gabapentin (300mg 3 x a day) back in Feb and am now up to 1200mg 3xday + 90mg Duloxetine 1xday. Do these things usually progress so fast? There was actually a hint of this going back about 15 years when the bottom of my feet started to feel like I was walking on stones. My doctor sent me to a podiatrist back then and they found nothing unusual and nothing more was done. It stopped me from being a runner anymore. That sensation stayed steady until the start of this year when it suddenly took off.

It was in March of this year that a Doctor (on an internet "get answers" type site) said I should see a Rheumatologist – and that was due to a question about degenerative lumbar, not the neuropathy. Since then, other people in my life who I consider well-informed have brought up Rheumatology when I tell them my symptoms. But, so far, all the Rheumatologists I have contacted want a referral. My primary isn't prepared to give me one, yet. How do I convince her? Or should I be asking my Neurologist?

Jump to this post

Depending on the organization of your medical clinic, you could ask your neurologist for a referral. They also make referrals to rheumatology. This approach is more likely to work if your neurologist and primary care doctor are not in the same clinic system. Some medical clinics only allow the primary care doctor to make referrals. In that case, you could ask your neurologist to recommend to your primary care doctor that she provide a referral to rheumatology.

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@pacer3702

Depending on the organization of your medical clinic, you could ask your neurologist for a referral. They also make referrals to rheumatology. This approach is more likely to work if your neurologist and primary care doctor are not in the same clinic system. Some medical clinics only allow the primary care doctor to make referrals. In that case, you could ask your neurologist to recommend to your primary care doctor that she provide a referral to rheumatology.

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Thank you! They aren't in the same clinic. I'll check with my Neurologist.

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I went to top neuropathy neurologist at Duke with symptoms of neuropathy. After the test she said "Yes, you have small fiber neuropathy. Bye, bye, I don't treat that. Go find a rheumatologist."

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My rhuematologist says there is no treatment so did the dr at Hopekins

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