Anyone here dealing with peripheral neuropathy?

Hi I was just diagnosed with peripheral Neuropathy. I don't have an appointment with Neurogist until August 31st.

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

I have been to many neurologists and cardiologists over the past 5 years in my home state, Hawaii, also in Washington State, California, and next will be in Arizona, trying to find a way to slow the progression of this peripheral neuropathy and some ominous changes in my heart and other organs. Now both arms are in braces for carpal tunnel syndrome and walking is no longer possible due to the lack of feeling in both legs. The latest doctor was the first to test my Kappa and Lambda light chains (along with protein in urine, and other related tests) and it appears to be amyloidosis. However, I won't know for sure until I get to the Mayo Clinic and have the hematology tests and biopsies done. If you are having a problem with PN that goes beyond RLS, have you asked your neurologist about checking on your free serum light chains?

@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

Thank you - What is RLS stand for? I would love to go to the Mayo Clinic but my insurance will not pay for my visit since there are doctors I can use locally. I may change my insurance in December so I can see someone at the Mayo Clinic. THANK YOU!

RLS = Restless Leg Syndrome. Best thing you can do at this point is to Google that term and read about it in depth. Especially the pros and cons on the two main medications used to treat it: Requip and Mirapex. I have done both of them and I am on Mirapex now for several years.

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:
http://www.mayoclinic.org/drugs-supplements/omega-3-fatty-acids-fish-oil-alpha-linolenic-acid/dosing/hrb-20059372
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

Have had it for 13 years. It sucks!!!

Restless Leg Syndrome