Hi Patti (@pkindron), one thing I would suggest if you don't already done it is to make up a list of questions you may have for the neurologist so you don't forget when you have your appointment at the end of August. It's so easy to forget what you wanted to ask when the appointment rolls around (for me anyway!).

John

@pkindron, I also have peripheral neuropathy, with no discernable cause. I've tried every medication available for neuropathy, and several others that are off label, and none of them have helped. Reactions to Lyrica made me incoherent, and I spent a night in the hospital, which was unfortunate, because it was helping. I am now taking Cymbalta (not sure it's doing anything) and Morphine sulfate contin. Still a lot of burning pain. BUT, 5 weeks ago, I had a spinal cord stimulator implant, and after the surgery healed, it started to relieve the pain. For a week, my pain has gone down from 8 to a max of 4, after a day working in the yard. There are quite a few meds used for neuropathy pain, but I don't know about treatment for the other symptoms. I have numbness in my hands and feet, and neuropathy evidence in other places. I know that balance and weakness are also symptoms, though I haven't reached that level.

Gabapentin and Lyrica have helped many people. I don't know if you have any pain, but if so, it's usually treatable. I had the numbness and pins and needles for a few years before the pain started. I've learned that everyone is different. I don't think that anyone can predict the progression of the disease. We can hope and pray that our progress is very slow.

Jim

That is a great idea. I will make up a list of questions for the neurologist. I was even thinking of purchasing a journal and writing down all the information I have. I've been to 3 other doctors and they don't explain to you about what to expect. I was handed a referral to go to the neurologist and on the referral form it stated i was going for the consult because of Peripheral neuropathy but he didn't even tell me what it was. I guess I should of asked the question but after the 4 MRI's and he told me that there was no tumors/cancer I was so happy about it I didn't even look at the referral until I left his office. Thank you so much!!
Patti

Hi Jim (@jimhd), I'm really happy to hear the spinal cord stimulator is giving you some relief from pain. If it works it is so much better than the drugs used for neuropathy pain symptoms. The drugs just mask the pain and a lot of the times you have to up the dosage to keep the pain at bay. They really do not address the problem - damaged nerves which cause the pain signals to be sent to the brain.

I do not have the pain but I have had the numbness in my feet and legs for over 20 years. It was only last year when I started being more proactive that I became aware of how the drugs work. Because the numbness was just below my knees I started to worry and I asked my doctor about lyrica (you know all those TV ads glorifying it) for my undiagnosed neuropathy. She put me on gabapentin and after a month I went back and told her it wasn't doing anything for me. She had a consult with the Mayo primary care doctor team and another doctor quizzed me on my symptoms. When I told him I didn't have any pain but only the tingling and the numbness, he told me the gabapentin (generic lyrica I think) only addresses the pain and does nothing for the numbness. My primary care doctor had me get a couple of different MRIs and the EMG before I could see the neurologist. After I met with him, he diagnosed that I had idiopathic small fiber peripheral neuropathy and I was one of the "lucky" ones that only had the numbness symptoms without the pain. He also burst my bubble by telling me there are no topicals, creams, medications that will address numbness. I left that appointment pretty depressed and started my search to learn as much as I can about my SFPN.

I learned there are a bunch of companies and folks with neuropathy treatments looking to take your money and it's up to you to do your own research and avoid scams. Fortunately there is a lot of information on how to avoid scams but it's out of sight, out of mind for a lot of folks. Here are the ones I've used:

Quazar's wonderful guidance about avoiding scams and snake oil cures:
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's HEALTH FRAUD PAGE
https://www.fda.gov/forconsumers/consumerupdates/ucm278980.htm

You can also link to this great resource from NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

That said, I have found something that works for me and has helped a lot of folks with PN get off of the pain medications. I was skeptical at first and took the list of supplements and vitamins to my doctor who shared it with the Mayo pharmacist to get his feedback on any interactions. His only comment was he thought the omega 3s in the list was pretty high and thought it should be less. But again, I'm the one with the health issue and it's my body so I took his input and did some further research and found that it was within guidelines of the numbers for omega 3 supplements for treating what ails me according to information on the Mayo Clinic's website:

This is the website for Facebook Group I found - Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) - http://www.facebook.com/groups/spnpd - website: http://solutions2pnpd.com/. It has been a blessing for me to find the group. I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I haven't made any more progress since December but I'm OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse - in other words there is nothing I can do to fix it. Others in the group with pain that had them bedridden have reported they are now able to live a normal lifestyle and have been able to taper off the drugs once they were on the full protocol and started feeling better. If you do decide to take a look and join the group, please read all of the information.

Hoping all of my neuropathy friends find a treatment that works for them!

John

John - happy to read your story - that's the first time I read it, and happy to know you are on the 'protocol'. I've been thinking of following that but wasn't sure. Not sure of the cause of my PN - my internist calls it diabetic neuropathy - probably because I am 'prediabetic' - (I told her if I could keep the A1c below 6 I wouldn't have to take medicine for diabetes - and she's agreeable to that). anyway, might order the supplements from Amazon today.

Thanks so much for your helpful information, going to hopkins to see the guru of neuropathy dr Hoke. Hope he has some idea of what my problem really is. the SOURCE. . EVEN though probably no cure but want to know what I have. Have read my guts out and even tell my neurologist what he has to do next. He is so lazy or should I say so BUSY. Will check both your sites. Cannot believe Mayo is being so innovative. Would not accept me so have not been there.Heard they were not that good at these kinds of problems but this sort of contact is really helpful. Thanks will keep you posted.

Somebody mention an antibody that I have never heard of . I was going to look it up on google but can not find it in the thread again. If you see it let me know. It is all capital letters and driving me crazy but can not find it as I go through the thread
l work in a lab and that really concerns me that I hsve never heard of it. Will keep looking. Thank Ann

@user* I wrote one down, would this be it? FGFR3 antibody

Maybe TS-HDS?
Study Description
Go to sections
Brief Summary:
The objective of this study is to develop a rationale for the selective treatment of small fiber neuropathy with immune globulin (IVIG) in the appropriate patients.
The investigators hypothesize that individuals with auto-antibodies targeting neuronal antigens (TS-HDS and FGFR3) and confirmed evidence of small fiber neuropathy (by skin biopsy analysis of intra-epidermal nerve fiber density) will have an improvement in both nerve fiber density and pain after treatment with immune globulin.
The co-primary endpoints will be a change in neuropathic pain (by VAS pain score) and a change in intra-epidermal nerve fiber density (by punch skin biopsy).
The data gained from this pilot study will establish a rationale, with an appropriate screening test, for the use of immune globulin for the treatment of small fiber neuropathy.

Condition or disease Intervention/treatment Phase
Small Fiber Neuropathy
Idiopathic Peripheral Neuropathy
Drug: Intravenous immunoglobulin
Drug: 0.9% Sodium Chloride
Phase 2

Detailed Description:
Small fiber neuropathies, and mixed small and large fiber neuropathies, have many potential causes including diabetes, vitamin deficiencies, environmental and toxic exposures, HIV, autoimmune and paraproteinemias.
However, despite this broad differential at least 30% of cases of small fiber neuropathies remain idiopathic. There is therefore a growing interest in the potential for using IVIG in small fiber neuropathy without direct proof that the disorder is caused by immune reactions. We have recently uncovered two novel autoantibodies, TS-HDS and FGFR-3, that are targeted again peripheral neural structure. TS-HDS is a disaccharide component of glycosylation of heparin and heparin sulfate.
Patients with elevated levels of IgM against TS-HDS display clear small fiber loss with IgM deposits around the outside of medium- & larger-sized capillaries with C5b-9 complement deposits. FGFR-3 is a secreted cell surface receptor; genetic defects of FGFR-3 are linked to achrondroplasia and other bony abnormalities.
The antibodies to TS-HDS and FGFR-3 are detected in up to 20% of patients with otherwise idiopathic small fiber neuropathy, but are rare in patients without small fiber neuropathy.
Dr. Levine (a co-investigator on this project) recently presented 3 cases of small fiber associated with elevated levels of auto-antibodies to TS-HDS or FGFR-3 who were treated with IVIG at 2 gm/kg/month for 6 months. He examined skin biopsies for intra-epidermal nerve fiber density and patient self-reported pain scores at baseline and after six months of therapy. All 3 cases showed marked improvement in pain scores. The average reduction in pain was 54%. In addition there was a clear increase in the intra-epidermal nerve fiber density (IENFD) after 6 months of therapy. Pre-treatment IENFD was 1.6, 1.7, and 2.4 at the calf. After 6 months of therapy the IENFD was 8.4, 5.7, 3.3 respectively (these are clinically significant improvement in nerve fiber density.
The investigators believe these anecdotal cases suggest that TS-HDS and FGFR-3 antibodies may be a marker for a group of SFN patients that are immune mediated and may respond to IVIG. (This case series was presented as a poster at the American Academy of Neurology meeting in 2017)

New to this website and trying to catch up on all of the good information here. Is there a test TS-HDS and FGFR-3 antibodies?

Aware that Dr. Oaklander from Mass General Hospital in association with some other doctors is doing a double blind study with idiopathic patients with small fiber neuropathy. I think that they should be looking for volunteers soon. This study follows the study that came out this year showing IVIG helps 70%+ of people with small fiber neuropathy with no positive inflammatory or autoimmune markers.