Small Fiber Neuropathy

Hi @wolfbauer. @elained. @diknzn. I wanted to thank you for your replies. I appreciate all that you share, so very much. My arms and hands are tingling with numbness, so I will write more just as soon as I can. Thinking of you all!

Hi, I'm new to this forum but certainly not new to small fiber neuropathy. I would like to first start by thanking all of you so much for all of your sharing because as my disease has been progressing with more and more symptoms, I've not gone to my neurologist, well for several reasons, 1 she's very dismissive of everything I tell her, so I've started to think that all my new symptoms were all in my imagination, when in fact as I read here, all of you share the same ones! And 2 she keeps telling me that there is nothing that she can do for me, and that I'm on the highest dose of Gabapentin that I can be on. When on my last EMG study she announced that my small fiber neuropathy had crossed over to a large fiber neuropathy, I asked her what that meant, she said just take more frequent rest periods through-out your day, and then she walked out of the room. What is that supposed to mean?? I asked my internist and he sent me to Duke University to be yet tortured again, with the understanding that I had developed MG and after two years they decided that that that's not what I had. So it's back to square one, but meanwhile I'm still looking the use of my arms and hands.
I can relate to just about everyone on this forum. I started about 11 years ago with toe pain on and off and a podiatrist diagnosed the problem as fallen arches. She said to purchase shoes with better arch support and enclosed backs since I only wore clogs. So I bought Dansko's and even though they were expensive I got used to wearing them. Eventually I saved up and bought another pair so that I could switch out shoes. What I liked best was the large toe box because it didn't rub on my toes. But as time progressed other problems cropped up. I always had low blood pressure, but now I was passing out on a fairly regular basis and getting carted off to the ER via ambulance to get filled up with IV fluids for a couple or more hours before they would release me. Each time I was admitted they would draw blood and each time my TSH was very high which meant a call to my MD and another switch in thyroid med levels. I have Hashimoto's Thyroiditis and the endocrinologist was basically keeping me hypothyroid. So I researched my disease and found another drug other than Synthroid and asked my internist to manage it for me. He agreed and I started to grow back some of the thinned out hair on the top of my head. All total I've had 38 admissions to the ER in the last 11 years for syncope. I've been lucky in the last five years or so because I've started to loose my eyesight prior to passing out which gives me a huge advantage. It gives me time to sit or lay down and prevent falling. So I haven't broken anything recently. The only problem is with all the times that I've passed out, I've also lost the capillary bed to my optic nerve and so now it looks like I've had long standing glaucoma that hasn't been treated. So my eye MD and internist got together and now I'm on a drug to keep my B/P elevated in an attempt to reduce or stop my syncopal episodes. So far it's helping fairly well, I feel one starting and I have the time to lay down so that I don't loose conscience.
I also have problems with my G.I. system where it almost comes to a complete halt. I was seeing a gastroenterologist first before my diagnosis of SFN because I was complaining that food was getting stuck in my esophagus. And sure enough on the upper G.I. series a tiny little pill that they gave me to swallow got stuck. So the radiologist asked me if I drank coffee. I said yes, but why?? He answered "because neither you or I can leave this room until that pill goes down and it doesn't look like that is going to be any time soon as you don't seem to have any peristaltic motion going on here. So we can use the hot coffee to melt the pill." Since that time fluids have tried to slip down my throat uninvited, and it's progressed to small solid materials as I'm eating. Needless to say, I don't eat out in public very often anymore. Choking in that extreme in terribly embarrassing.
Also, spring and summer used to be my all time favorite times of the year. Now I hate them because any rise in temperature relates to a rise in pain!! I'm on fire 24/7 as it is, but when the surrounding temperature increases, it just intensifies my pain!! I can't stand being dressed, I can't stand anything touching my feet, so I had to buy a foot cradle for my bed to get the sheets and in the winter months the comforter as well off my feet. The only problem is, it's hollow in the middle and my cat thinks it's a cat hammock and he jumps in it when I'm sleeping sometimes and then I'm awakened by the bedclothes touching my feet and legs.
I have a daughter with high functioning Asperger's who was always so picky about her clothes, and who always cut the labels out of her clothes because she couldn't stand them touching her. It used to drive me crazy because I never knew how to wash the clothes because the washing directions were always gone. Well now I have to say I have total empathy for her, because I can't stand half of the clothes in my closet touching me any more. I live in the mountains and I used to hike, I can't even feel the ground where my feet touch the ground let alone hike anymore. I used to drive long distances 16 hours straight threw, now I can barely hold on to the steering wheel for short trips to the supermarket. And that reminds me, I feel like a lizard. in the summer when I go out to airconditioned stores I get so cold I have to go outside to warm up. In the winter like now I'm freezing 24/7 and even the few warm days that we had when people were outside in shorts and tea shirts I was still dressed in fleece and I was shivering. I honestly thought I was loosing my mind about the hot flashes and chills. And I'm on medication to monitor my tachycardia. Plus I just started with another very annoying symptom that I didn't read on this forum and I wonder if anyone has had problems with it. I only know of another friend who has had issues with it for at least 5 years and she has peripheral neuropathy. It's skin inching. Sometimes it gets so intense I think that I'm going to rip my flesh off. my neuro gave another drug to calm it down, but that's about all it does.
Oh and another thing is loss of bowel and bladder function which seem to be transient not regular. So because I never know when I'm going to have an issue I can't leave the house without protection anymore.
Oh gee, I just remembered another symptom the brain fog, boy oh boy am I glad I found this forum. I thought for sure I was a goner and honestly between the neuropathy pain, and the pain from my mixed collagen vascular disease which is a lot of arthritis pain, some days I wonder what there is to live for. I'm allergic to most narcotic pain killers, because of asthma I don't handle NSIDS well, and quite frankly I like my liver too much to take too much Tylenol, and honestly for the amount of pain I'm in Tylenol is a joke!
I have an appointment next month with a new Neuro way out of this area because the neuros around here, and please forgive me, but quite frankly I think they all got their MD'S out of a Cracker Jack box. So I'm so hopeful that things will improve. I've taken some notes on the treatments that you folks have tried and I am going to bring them up at maybe not my first meeting, but surely my second.
What a blessing it is to live in a free county and to have access to others who share a common problem. God bless you all. It's taken me a whole day to write this due to finger mobility issues, but next time probably will be less. bye for now.

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.

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

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!

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.

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.

@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