Looking to connect with people who have non-diabetic neuropathy

They found that I have short fiber, long fiber, motor and autonomic PN. They have not found any cause so they are saying that the old symptoms were hereditary and that symptoms in the last year or so are from a secondary cause which is autoimmune.

@arnrob, @marinelastef, @johnbishop and anyone else on a journey through the progressive condition of idiopathic polyneuropathy and idiopathic small fiber neuropathy. You asked to know what works for me. You may want to look back at some of my other posts for specifics. However, things change and now, after about 8 years, I realize that I need to modify and change treatment options as my pain increases in intensity and frequency and my mobility decreases. Here are seven tips: 1. A diagnosis is important so... go through the muscle tests, an MRI, blood panels and most importantly the skin test which was, for me, the most revealing and confirming. 2. Find a neurologist who can be your provider partner. 3. Be religious about following prescribed medications and activities so that the feedback will be meaningful and dosage modifications can be made. 4. As your activity level decreases do the same with your food intake. As my provider reminds me....calories in can only equal calories out and portion control is the best way to get over this hurdle. You will find that after a while, saying "no thank you" becomes much easier. I think they call that getting rid of habit energy. Besides, pain and food just don't pair well. 5. Let go and grieve for the things you used to be able to do but now cause too much discomfort or for which you have to pay the price afterward. Then find new activities. Do some of those things you always wished you had time to do. 6. Ask for help when feeling unstable or unable. Use a walking support to avoid falling when one or the other of your legs has decided to take the day off. 7. Stay in touch with family and friends. Don't wear them out with a recitation of your discomforts.....just express gratitude for the fact that they care. That's enough for today. Let me know if you have specific inquiries and I will respond from my perspective and experience.

Pretty awesome advice Chris @artscaping. Thank you for posting it.

You, John, are my guiding light.....so am happy that you found my comments of value.

Chris, I'm still trying to put together my notes, my wife's notes and her sister's notes from the Stem Cell meeting at the MN Neuropathy Association last Saturday. It was a good meeting with lots of hope if you are a cancer patient but they still haven't broken the code for the Schwann cells yet which is the last step according to the speaker. I hope to have them together and will post them in the next day or so.

John

i have non-diabetic peripheral neuropathy. the medication my doctor has prescribed is not helping, and i am almost to a maximum recommended dose. has anyone tried CBD oil or cream for pain? what other medications besides gabapentin (or lyrica, etc) have you tried? no NSAIDS help with the pain and i do not want to take narcotic/controlled substance pain relievers.

my mom tried IVIG and didn't see relieft. also, it was very stressful to her heart. make sure your heart is healthy before starting!!!

Hi @trwee, welcome to Connect. I'm tagging @artscaping who has discussed CBD oils and other related treatments for neuropathy to see if he can offer any suggestions for you.

What medication has your doctor prescribed that is not helping? Have you discussed it with the doctor?

John

Thank you for taking the time to share !! Good lock finding the right medications. I’ve been trying and still sourcing for the right ones for me too.

@artscaping- Wow! just loved your humbleness & transparency. Excellent advise in your 7 points! All of us can put several of those points to work in our everyday lives whether we are dealing with neuropathy or not. Thank you! Jim @thankful