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!

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.

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.

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.

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.

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?

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.

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

What is IVIG?

Hello, @bruces – I believe the reference is to intravenous immunoglobulin (IVIg).

IVIG is a monthly infusion of antibodies from hundreds of transfusions. If you have certain inflammatory or autoimmune conditions it will make a huge difference in your symptoms. I was almost in a wheelchair and now am walking with only a slight limp. There is evidence that it helps a majority off people with SFN. There is a double blind study going on right now to show how IVIG works on SFN. I have PN in short fiber, long fiber, motor and autonomic nerves. IVIG helps a lot with sensory PN. Even if you don't have the classic symptoms of inflammatory or autoimmune PN IVIG can often help. It is expensive so most insurance limit IVIG to about 15 discrete diseases and where "medically necessary." You need a creative doctor to help prove that IVIG is medically necessary for you.

Thank you so much for the information, I’ve been diagnosed with SFN in the last year. it has stopped my life. The onset has been very fast within 6 months from slight tingling in my hands and feet to total numb legs and arms. SFN seems to now be consuming my torso including bowel and bladder control. This may seem insignificant in comparison to the pain we’re all going through BUT I’m curious if other people are seeing hair loss. I was a very furry guy, with thick hair covering all of me. But within one month most all my body hair has fallen out. Have other people experienced this? And if you have has any one had it return at any point?