Small Fiber Neuropathy

Posted by wjones159 @wjones159, May 26, 2018

Good morning,

I have been diagnosed with SFN, and was a bit alarmed at my biopsy results. I have read over a lot of the symptoms and discussions others posted, and did not want to be overly redundant, so in the interest of keeping this post marginally analytical, I was hoping you could give me an idea of the severity of the results.

The lab states that low density is in the range of 6.2-6.8 for the thigh. My observed density was 0.07. For the calf the low range was 4.8-5.4 and my observed was 0.67.

Those numbers seem extremely poor and depressing. Is it as bad as the numbers would seem?

Thanks for any thought you can provide
-Scott

@givinghope

Hi @johnbishop. The article link you shared is right on point. I can tell you from experience the EMG and any other test other than the skin punch biopsy will not give the patient a proper diagnosis. I was sent for multiple EMG’s where they would twist my legs like a pretzel haha until they could get a reading. None of the EMG tests over 3 years ever showed signs of SFN. Only when I sought a second opinion, waited six months for an appointment to have the skin biopsy and the QSART test done, did my life change in a positive way. Please don’t get me wrong, I was less than thrilled with confirmed SFN, however, at least now we had a course of treatment. As I’ve said before, Lyrica works really well for me. Many other meds (Cymbalta, etc) did not. Cannabis helps distract the brain. I encourage everyone with potential SFN to read the link shared by @johnbishop here. While it is from 2009, it is the most comprehensive, understandable article on that topic I’ve seen. I wish you all a positive, pain free day

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Thank you for your input. Good to know I'm not the only one going crazy for proper dx!
I do not tolerate lyrica or any of these anti convulsant meds.
Finding some relief w med marijuana oil and just rcvd salve I believe John recommended from cbd nanomeds. (Smells refreshing as well).
Seeing 3rd neurologist this month. Well be asking for punch skin Biopsy. Can you tell me what that other test is? The QSART, not familiar w it.
Thank you very much,
Claire

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@clairecas

Thank you for your input. Good to know I'm not the only one going crazy for proper dx!
I do not tolerate lyrica or any of these anti convulsant meds.
Finding some relief w med marijuana oil and just rcvd salve I believe John recommended from cbd nanomeds. (Smells refreshing as well).
Seeing 3rd neurologist this month. Well be asking for punch skin Biopsy. Can you tell me what that other test is? The QSART, not familiar w it.
Thank you very much,
Claire

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Hi Claire @clairecas, Here's some information on the QSART test.

Sweat testing to evaluate autonomic function
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046462/

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@johnbishop

Hi Claire @clairecas, Here's some information on the QSART test.

Sweat testing to evaluate autonomic function
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046462/

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Hi John,
Thank you very much!
I'll read now. Was just attempting to look up : )

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@cwallen9

Thanks for the input. I'm sorry to hear you suffer from small fiber neuropathy also. Is there any treatment for your condition? Any pain management medicine and/or techniques that help reduce the pain?

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Hi @cwallen9. I am new to this or any forum. I am sorry to hear that you suffer from SFN. I have been dealing with it for over a decade. Like others who have posted to this forum, I have tried extreme doses of gabapentin, lyrica (very similar to gaba), cymbalta, nortriptyline, amitriptyline and most recently methadone. I am currently taking lyrica, cymbalta and nortriptyline just to take the edge off of the debilitating pain in both legs and feet. I had pretty much given up on having any normalcy in my life until two months ago. I thought I would just try to bear what time I have left without any hope of a pain-free day.

After prescribing methadone for me, my neurologist referred me to the local pain clinic because he did not want the liability of managing my long-term use of methadone. I assumed that the pain clinic would just be a pill mill. To my surprise, my primary physicians at the clinic asked me to read up on Neurotransmitter Implants. I was less than excited by what I read. A year went by before I broached the subject with him again.

My implant procedure took place about 2 months ago. While my experience has been less than spectacular, I can honestly say my days are more tolerable. In fact, some have been down right pleasant. I cannot recall the last time I could say that. Food for thought.

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Thanks for the info. We are trying to find a good pain management doctor who doesn't just do steroid injections. We are in a small town and it is hard to find good doctors. I am glad you found something that helps.

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@cwallen9

Thanks for the info. We are trying to find a good pain management doctor who doesn't just do steroid injections. We are in a small town and it is hard to find good doctors. I am glad you found something that helps.

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@cwallen9 — I'm not sure if it's an option but Mayo Clinic Pain Rehabilitation Centers offer a 3 week program that may be helpful. I am wondering if they may be able to offer a local referral. More information is available on their website here:

https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/services

Liked by barbarn

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@diknzn

Hi @cwallen9. I am new to this or any forum. I am sorry to hear that you suffer from SFN. I have been dealing with it for over a decade. Like others who have posted to this forum, I have tried extreme doses of gabapentin, lyrica (very similar to gaba), cymbalta, nortriptyline, amitriptyline and most recently methadone. I am currently taking lyrica, cymbalta and nortriptyline just to take the edge off of the debilitating pain in both legs and feet. I had pretty much given up on having any normalcy in my life until two months ago. I thought I would just try to bear what time I have left without any hope of a pain-free day.

After prescribing methadone for me, my neurologist referred me to the local pain clinic because he did not want the liability of managing my long-term use of methadone. I assumed that the pain clinic would just be a pill mill. To my surprise, my primary physicians at the clinic asked me to read up on Neurotransmitter Implants. I was less than excited by what I read. A year went by before I broached the subject with him again.

My implant procedure took place about 2 months ago. While my experience has been less than spectacular, I can honestly say my days are more tolerable. In fact, some have been down right pleasant. I cannot recall the last time I could say that. Food for thought.

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Hi Cwallen9,

Sorry that you have small fiber neuropathy which is causing you so much pain. Your list of medications is very familiar. Really hope that your implant continues to provide increasing relief.

Just curious, did any of your doctors suggest IVIG the antibody therapy? IVIG using antibodies from around 1000 transfusions to bolster your immune system, provide symptom relief and provide energy to do the things you want to do at least part of the month.

They did a study at Mass General Hospital in Boston of IVIG with 55 patients that had small fiber neuropathy did not have the traditional marker for autoimmune or inflammatory processes and 70+% had positive responses to the treatment. They are now recruiting for a double blind study on the results of IVIG on SFN patients.

My doctors have diagnoses me with rapid onset peripheral neuropathy that is autoimmune induced. I have small, large, motor and autonomic neuropathy. Last July I was close to having to be in a wheelchair to get around, I actually needed one to make an airplane connection.

My IVIG in August was amazing and completely got rid of some terrible symptoms like intense burning in my hands and feet. Many have never come back. Other symptoms get better with the treatment, but as my liver processes the antibodies out of my system (21 day half life), some other systems slowly come back. But most exciting was that by day 2 my walking was improving dramatically. Walk with a bit of a shuffle, but I can slowly walk my dog and get around the grocery store with no problem (shopping cart walker helps!).

My experience is that doctors don't want to prescribe this as it adversely impacts their own finances and the amount of bonuses and raises. Additionally, insurers put pressure on doctors and doctors groups not to prescribe such expensive remedies ($15,000 per months for the rest of your life in many cases). It is my understanding that the insurers are reducing the number of diseases (BCBS has 15) the are at least covered for a 3 month trial of IVIG. This is the reason for the double blind study to force insurers to at least patients with SFN try IVIG.

A friend I know was able to go back to work full time after her first infusion. She has SFN and no autoimmune or inflammatory markers.

IVIG is expensive but how much is a life worth? Shouldn't people who have symptoms that are destroying their traditional life get a chance to see if IVIG works? Insurers have to allow IVIG if it is medically necessary. This means in my case I used my retirement funds to pay for a 3 month trial and proved it works. Now BCBS is paying for my IVIG treatment and is going to reimburse the money I spent on the trial so I will get my retirement funds back.

I monitor this site and there is very little discussion about the effectiveness and side effects of IVIG. If it works its a miracle, it also can be an expensive disappointment if it doesn't work. All I know is that 4 people I know including me have benefited greatly and 2 people I know had no effect from the injections. Hope there will be an active discussion here about the use of IVIG, despite doctors and insurers cooperating to limit the use of this drug.

One more thought is that if more people use this, scientists will develop bacteria (or pigs?) to produce the antibodies like they do with insulin and other natural components. For now, patients with debilitating symptoms need to demand a 3 month IVIG trial, and get a second opinion if there first doctor is resisting to prescribing IVIG.

Good luck!

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That is good to hear that you have had success with IVIG. I am seeing an immunologist now that is considering IVIG, but he says he needs to run tests to show that it is an autoimmune issue. He says that it is really expensive (~$500k), so insurance will need proof.

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@cwallen9

That is good to hear that you have had success with IVIG. I am seeing an immunologist now that is considering IVIG, but he says he needs to run tests to show that it is an autoimmune issue. He says that it is really expensive (~$500k), so insurance will need proof.

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The cost of IVIG is $15,000 per month if with a pharmacy or $45,000 a month if through a hospital so not a cheap remedy, but if it makes you better well worth the cost. Depending on the contract your doctor's doctors group has with your insurer and his hospital, getting you IVIG coverage can impact his salary, bonus or extra money for new equipment. So don't assume that your doctor is trying as hard as is necessary to get you coverage. Ask to see any letters/appeals the are going to the insurer. Whether because they are not trained in advocacy or because they don't really want you to get coverage letters and appeals to insurers can be terrible.

Urge them to push for a 3 month trial to demonstrate that it works. Make sure that your doctor isn't putting things in his opinion that give your an insurer a good reason for denial. I could walk on snow since I was 10 with no other major effects; then about 18 months ago I got a rapidly progressive PN that impacts every aspect of my life. The opinions of my doctor to me as well as doctors from the Mayo and Tufts is that I have a new separate autoimmune mediated PN. However, my doctor started his letters "Mark has a long history of hereditary neuropathy." Either he doesn't know how to make an arguement or wanted BCBS to have a good reason to deny my application.

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@arcticmark

The cost of IVIG is $15,000 per month if with a pharmacy or $45,000 a month if through a hospital so not a cheap remedy, but if it makes you better well worth the cost. Depending on the contract your doctor's doctors group has with your insurer and his hospital, getting you IVIG coverage can impact his salary, bonus or extra money for new equipment. So don't assume that your doctor is trying as hard as is necessary to get you coverage. Ask to see any letters/appeals the are going to the insurer. Whether because they are not trained in advocacy or because they don't really want you to get coverage letters and appeals to insurers can be terrible.

Urge them to push for a 3 month trial to demonstrate that it works. Make sure that your doctor isn't putting things in his opinion that give your an insurer a good reason for denial. I could walk on snow since I was 10 with no other major effects; then about 18 months ago I got a rapidly progressive PN that impacts every aspect of my life. The opinions of my doctor to me as well as doctors from the Mayo and Tufts is that I have a new separate autoimmune mediated PN. However, my doctor started his letters "Mark has a long history of hereditary neuropathy." Either he doesn't know how to make an arguement or wanted BCBS to have a good reason to deny my application.

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Is also permanent disability for this. Dose this qualify for disability benefits? I may need to look in to this aspect in the near future.

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Has anyone had antibody testing for their SFN? I tested positive for IgG vs FGFR3, and have found very little information on this type of autoimmune polyneuropathy.

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Hello @donnap, welcome to Mayo Clinic Connect. I was able to find some information that may be helpful. One of the tools I use that helps find medical research type articles is Google Scholar (https://scholar.google.com/).

Treatment for IgG and IgA paraproteinaemic neuropathy
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD005376.pub3/full

IgG monoclonal paraproteinaemia and peripheral neuropathy PDF (Journal of Neurology, Neurosurgery, and Psychiatry 1993;56:52-57)
https://jnnp.bmj.com/content/jnnp/56/1/52.full.pdf

NIH – Monoclonal Gammopathy Associated Peripheral Neuropathy: Diagnosis and Management
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5573223/

Have you been diagnosed with small fiber neuropathy? Are you able to share any of your symptoms?

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@johnbishop

Hello @donnap, welcome to Mayo Clinic Connect. I was able to find some information that may be helpful. One of the tools I use that helps find medical research type articles is Google Scholar (https://scholar.google.com/).

Treatment for IgG and IgA paraproteinaemic neuropathy
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD005376.pub3/full

IgG monoclonal paraproteinaemia and peripheral neuropathy PDF (Journal of Neurology, Neurosurgery, and Psychiatry 1993;56:52-57)
https://jnnp.bmj.com/content/jnnp/56/1/52.full.pdf

NIH – Monoclonal Gammopathy Associated Peripheral Neuropathy: Diagnosis and Management
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5573223/

Have you been diagnosed with small fiber neuropathy? Are you able to share any of your symptoms?

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Thank you John. My neuropathy symptoms started in my hands. In 2014, I was diagnosed with bilateral Thoracic Outlet Syndrome. I have had surgery for this on both sides. The surgeries didn't help, so In 2015 I had surgery to relocate the ulnar nerves in both arms. (the thought was that I had a secondary compression at the elbow causing the neuropathy.) Those surgeries were also unsuccessful. Since that time, my neuropathy has been progressing to my chest, trunk, back, buttocks, and lower extremities. I have lots pain- mainly a constant burning, but also some shooting and throbbing when I overuse my hands. (some of my issues may be a result of the surgeries that I had.) I have a lot of trouble sleeping, because the pain to my tailbone is worse with lying down. I also have difficulty sleeping on my sides due to the previous surgeries)
I went to a new pain doctor 3/2018 who did the skin biopsy which diagnosed the small fiber neuropathy. The third neurologist I went to sent the right lab tests to Washington University, and found that I had elevated IgG vs FGFR3. (this was August, 2018)
I just finished my 3rd round of IVIG last week. I have been having mixed results. My first round was for a full week at the end of August. My second round was for 2 days the second week of December, 3rd round was Jan. 10th and 11th.

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@donnap

Thank you John. My neuropathy symptoms started in my hands. In 2014, I was diagnosed with bilateral Thoracic Outlet Syndrome. I have had surgery for this on both sides. The surgeries didn't help, so In 2015 I had surgery to relocate the ulnar nerves in both arms. (the thought was that I had a secondary compression at the elbow causing the neuropathy.) Those surgeries were also unsuccessful. Since that time, my neuropathy has been progressing to my chest, trunk, back, buttocks, and lower extremities. I have lots pain- mainly a constant burning, but also some shooting and throbbing when I overuse my hands. (some of my issues may be a result of the surgeries that I had.) I have a lot of trouble sleeping, because the pain to my tailbone is worse with lying down. I also have difficulty sleeping on my sides due to the previous surgeries)
I went to a new pain doctor 3/2018 who did the skin biopsy which diagnosed the small fiber neuropathy. The third neurologist I went to sent the right lab tests to Washington University, and found that I had elevated IgG vs FGFR3. (this was August, 2018)
I just finished my 3rd round of IVIG last week. I have been having mixed results. My first round was for a full week at the end of August. My second round was for 2 days the second week of December, 3rd round was Jan. 10th and 11th.

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Hello @donnap, there is another discussion you might be interested in to learn what others use to treat their neuropathy symptoms. @jenniferhunter may have some suggestions for you. She mentions thoracic outlet syndrome in the follow discussion post.

Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=51#comment-254367

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@arcticmark

Ask you new doctor about IVIG! It is the only thing that will reverse your symptoms if it works for you. Recent study of small fiber neuropathy with no autoimmune or inflammatory markers showed 74% improved with IVIG. That study had 55 hand picked patients. MGH now doing a double blind study to prove IVIG works for small fiber. I was almost in a wheelchair and after IVIG I am walking my dog (slowly) through the woods. A world of difference!

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What is IVIG?

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