Small Fiber Neuropathy

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

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/

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

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.

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.

@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

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.