Just Diagnosed with Small Fiber Neuropathy

Hello @jfouts1979, Welcome to Connect. You do have a right to appeal health insurance claim denials - https://www.healthcare.gov/appeal-insurance-company-decision/appeals/ It's good to hear the IVIG did provide some relief for you.

Are you able to share a little more about your diagnosis and your symptoms?

After 3 years of denials, I was able to try 2 rounds of infusions - IVIG did begin to help me - then insurance denied it stating I showed no improvement (without me having a doctor appointment and without talking to me) - I am pretty sure that is grounds for a bad faith claim - on the part of the insurance company not acting in good faith - but that is a separate issue - yes - the IVIG did begin to help. Interestingly, I also have No to very low IgM.

After 3 years of denials, I was able to try 2 rounds of infusions - IVIG did begin to help me - then insurance denied it stating I showed no improvement (without me having a doctor appointment and without talking to me) - I am pretty sure that is grounds for a bad faith claim - on the part of the insurance company not acting in good faith - but that is a separate issue - yes - the IVIG did begin to help. Interestingly, I also have No to very low IgM.

26 yo, Female. I was diagnosed with SFN through punch biopsy in the last year. My symptoms are non-typical for SFN - no burning pain, just extreme hypersensitivity sensitivity everywhere on my body to materials/fabrics. Materials that normal people aren't annoyed by feel like a scratching sensation on my skin that drives me crazy. Can't tolerate most clothing, and the seams on clothing are the WORST. The pain NEVER changes day-to-day, it just increases one level randomly each year. I'm barely able to wear any types of clothing anymore. I have ADHD, anxiety, exercise-induced asthma, acne, allergies, anemia, acid reflux, eustachian tube dysfunction, folliculitis, neuromas in both feet, and right now a lot of fatigue and high copper levels (likely unrelated to SFN though, working with a hepatologist to figure this out). Also take thyroid medication to tweak thyroid levels, even though they aren't out of range - since I'm only 26 just trying to get closer to what a normal 26 year old would have. Treating the anemia and hypothyroid and other conditions doesn't help the SFN at all. I've taken Lyrica, Vitamin B12 shots, Gabapentin, Abilify, Cymbalta, Trileptal, Clonidine, Desipramine, Naltrexone, Lamotrigine, Memantine, Mexiletine, Ketamine, Buprenorphine, Nortriptyline, Tizanidine, Tramadol, Lamictal, and had TMS (Transcranial Magnetic Stimulation) therapy. Starting to run out of meds to try. I'm ANA positive with RNP antibodies, have minor signs of Sjogrens but negative Sjogrens antibodies, high C50 but normal C3 and C4 complements, glucose at 90-100 usually, A1c at 5.6%, so borderline pre-diabetic but not enough for a diagnosis. Working with Stanford Autonomic Disorder program for some more antibody testing to see if we can find a cause. I'd really prefer not to run out of options and have to take opioids the rest of my life, but it's pretty terrifying to have the disease already in an extremely bad state when I'm only in my 20s. Any additional medication/treatment suggestions welcome. I would need a formal autoimmune diagnosis to get IVIG covered.

Hello @nlangmack, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. It sounds like you certainly have a lot going on. I only have numbness with my idiopathic small fiber neuropathy. I think that it's good that you are doing your own research to learn as much as you can about your health condition. One of my favorite search tools for medical research type information is Google Scholar (https://scholar.google.com/). Another good resource for neuropathy information is Neuropathy Commons (https://neuropathycommons.org/).

I found an article that discusses some of your symptoms of sensitive skin that sounds a lot like you describe.
"Tactile allodynia: This is pain caused by touch. This can include clothing pressing against the skin (especially the tighter parts of clothing, such as ..." -- Allodynia: A Rare, Distinct Type of Pain in Fibromyalgia and ME/CFS: https://www.verywellhealth.com/allodynia-definition-and-types-fibromyalgia-715929

There are a couple of discussions that could have some helpful information also based on the article above.
-- Allodynia: https://connect.mayoclinic.org/discussion/alloydinia/
-- Chronic Illnesses of Millions of Women Left Untreated: https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

The second discussion has a link to a TED Talk by Jennifer Brea, that seems to relate to a lot of your symptoms so may be helpful -- What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
— https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I know it must be terribly difficult for you. Are you able to share which of your symptoms is the worse?

Thanks for the suggestions! Since it's been a 5-year path to diagnosis I'm pretty familiar with the disease, but continue to find it strange that I'm the only person I know of with skin sensitivity as the primary symptom (having looked at a lot of forums). The worst symptom is just sensitivity to clothing/seams. I also have a hypersensitivity to room temperatures (eg 73 is way too hot for me and I get nauseous), but the clothing thing is by far the worst because there's so few pieces of clothing left that I can wear. It sucks that there are truly no treatments for SFN - only pain management (which doesn't seem to be working for me). I'll definitely keep an eye on google scholar.

26 yo, Female. I was diagnosed with SFN through punch biopsy in the last year. My symptoms are non-typical for SFN - no burning pain, just extreme hypersensitivity sensitivity everywhere on my body to materials/fabrics. Materials that normal people aren't annoyed by feel like a scratching sensation on my skin that drives me crazy. Can't tolerate most clothing, and the seams on clothing are the WORST. The pain NEVER changes day-to-day, it just increases one level randomly each year. I'm barely able to wear any types of clothing anymore. I have ADHD, anxiety, exercise-induced asthma, acne, allergies, anemia, acid reflux, eustachian tube dysfunction, folliculitis, neuromas in both feet, and right now a lot of fatigue and high copper levels (likely unrelated to SFN though, working with a hepatologist to figure this out). Also take thyroid medication to tweak thyroid levels, even though they aren't out of range - since I'm only 26 just trying to get closer to what a normal 26 year old would have. Treating the anemia and hypothyroid and other conditions doesn't help the SFN at all. I've taken Lyrica, Vitamin B12 shots, Gabapentin, Abilify, Cymbalta, Trileptal, Clonidine, Desipramine, Naltrexone, Lamotrigine, Memantine, Mexiletine, Ketamine, Buprenorphine, Nortriptyline, Tizanidine, Tramadol, Lamictal, and had TMS (Transcranial Magnetic Stimulation) therapy. Starting to run out of meds to try. I'm ANA positive with RNP antibodies, have minor signs of Sjogrens but negative Sjogrens antibodies, high C50 but normal C3 and C4 complements, glucose at 90-100 usually, A1c at 5.6%, so borderline pre-diabetic but not enough for a diagnosis. Working with Stanford Autonomic Disorder program for some more antibody testing to see if we can find a cause. I'd really prefer not to run out of options and have to take opioids the rest of my life, but it's pretty terrifying to have the disease already in an extremely bad state when I'm only in my 20s. Any additional medication/treatment suggestions welcome. I would need a formal autoimmune diagnosis to get IVIG covered.

Hello @nlangmack, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. It sounds like you certainly have a lot going on. I only have numbness with my idiopathic small fiber neuropathy. I think that it's good that you are doing your own research to learn as much as you can about your health condition. One of my favorite search tools for medical research type information is Google Scholar (https://scholar.google.com/). Another good resource for neuropathy information is Neuropathy Commons (https://neuropathycommons.org/).

I found an article that discusses some of your symptoms of sensitive skin that sounds a lot like you describe.
"Tactile allodynia: This is pain caused by touch. This can include clothing pressing against the skin (especially the tighter parts of clothing, such as ..." -- Allodynia: A Rare, Distinct Type of Pain in Fibromyalgia and ME/CFS: https://www.verywellhealth.com/allodynia-definition-and-types-fibromyalgia-715929

There are a couple of discussions that could have some helpful information also based on the article above.
-- Allodynia: https://connect.mayoclinic.org/discussion/alloydinia/
-- Chronic Illnesses of Millions of Women Left Untreated: https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

The second discussion has a link to a TED Talk by Jennifer Brea, that seems to relate to a lot of your symptoms so may be helpful -- What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
— https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I know it must be terribly difficult for you. Are you able to share which of your symptoms is the worse?

I am so sorry you have to deal with this. My name is Jason and i have been diagnosed with Idiopathic Small Fiber Nephropathy and am 45 years old. i do not have diabetes, i do not drink alcohol and am looking for others to just talk to.