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

@albiet

can you send me a link to that study. i'd love to try and get into one.

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The details of the trial are at:https://www.clinicaltrials.gov/ct2/show/NCT03401073?recrs=abdefm&cond=neuropathy&intr=immunoglobulin&cntry=US&state=US%3AMA&rank=1

In brief, it is to see whether IVIG is effective in lowering pain in patients who have all four of the following:
1. Skin biopsy that shows small fiber neuropathy
2. No known cause of the neuropathy; also termed idiopathic
3. Pain of more than 4 on a scale of 1 to 10
4. Positive blood test (that they would do when you go in to be evaluated) that shows one of two newly identified antobodies against nerve cells
The trial is being done at Beth Israel Hospital in Boston. They will enroll 20 patients, half of which will get placebo and the other half IVIG. The principal investigator is Dr. Christopher Gibbons. If you are interested, contact Sharika Rajan MD at either srajan@bidmc.harvard.edu, or call the main BI number at 617-667-8000 and ask for Dr. Rajan. NOTE: the contact phone number given on the website link above for Dr. Rajan is not a working phone number.

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@arcticmark

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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Thank you so much for this information! I read a bit about Mass General online and the study. Will bring it up to my neurologist this week. If you don't mind me asking your age?? Curious if there is a common age among SFN patients. I have had it, I believe for 3 years but was finally diagnosed on February and turned 49 in March.

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@rwinney

Thank you so much for this information! I read a bit about Mass General online and the study. Will bring it up to my neurologist this week. If you don't mind me asking your age?? Curious if there is a common age among SFN patients. I have had it, I believe for 3 years but was finally diagnosed on February and turned 49 in March.

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Hi, I have no idea about a common age, but I just turned 61 and I know another person with SFN who is a couple years younger.

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@arcticmark

Hi, I have no idea about a common age, but I just turned 61 and I know another person with SFN who is a couple years younger.

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i might have asked prior but what drugs are you on to help control pain.

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@johnbishop

@wjones159 that's a good question and I wished I could answer. Unfortunately I have no medical training or background. I had an EMG nerve conduction test to test for nerve damage that was used to diagnose my small fiber peripheral neuropathy. There is a discussion here on Connect about the test:

Groups > Brain & Nervous System > Nerve conduction test
https://connect.mayoclinic.org/discussion/nerve-conduction-test/

I agree with Chris @artscaping about getting a more definitive diagnosis. Maybe you've already done this but I like the way you listed your health history and if you haven't discussed it with the neurologist I'm wondering if that would give them more data to use.

Keep asking questions…you are your best advocate!

John

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John, neurologists generally biopsy whichever leg experiences more symptoms. Once results come back positive for small fiber, the only reasons you would repeat in the opposite leg (There are like 2 or 3 labs nationwide that analyze the samples and I know Corinthian Labs which did mine costs THOUSANDS, my insurance didn't cover it, and thankfully the hospital ate the cost), would be if you had a concern or reason to track the progression of neuropathy in that limb, or if the first leg results were unable to provide a clear/definitive diagnosis of either length/non-length dependent SFN.

Hope this helps Scott @wjones159! Everyone has a Saturday will moments of relief!
Wolf

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