Living with Neuropathy - Welcome to the group

Hi @cordy, you can send your personal contact information including email address if you use a private message to a member. The Get Started on Connect users guide explains how to send a private message to a member here:

-- https://connect.mayoclinic.org/get-started-on-connect/#send-private-message

The reason it's not allowed in a normal discussion post is to protect members privacy and security. When your email address appears in a discussion post it can open you up to spamming from outside sources. You can access the Get Started on Connect user guide from any Connect page by going to the bottom of the page and clicking the link under Mayo Clinic Connect column at the left side.

If you live within driving distance of the Minneapolis area, the Minnesota Neuropathy Association is having their next meeting at 10 AM on Saturday, February 2nd. MNA presents a repeat of one of our most popular programs: Circle of Conversation

You are the program! You have a great incentive to discover what works, and this is your chance to share it with others in small groups, and learn what has worked for them. What medications/treatments do you depend upon? How do you pay for your medications? Is there anything surprising about neuropathy? We'll discuss these, or questions like these, changing them every 15 minutes or so. It's OK to just share an idea, something your doctor recommends,
or an article you have read……or you can just listen. And caregivers, we want to hear from you, too!

This year, we are adding a new element to the program, and will call it "Show and Tell," after our children who were so eager to bring a pet, or an artifact, or some other odd thing to school and tell about it. Only this time, you can bring bottles of supplements, or canes, or warm socks, or Zopec devices, or anything else you want to recommend to your fellow PN members. But you don't have to. Just come -- we'd love to see you.

I have a diagnosis of axonal polyradiculoneuropathy, based on EMG tests and office tests. It's not severe at this time, so no medications are taken. Just curious if anyone out there has the same condition and what treatments might be effective. Thanks

Hi @jlind it must be relieving to not take any medications at this time.

I wanted to share this link in hopes it could be helpful: https://www.patientslikeme.com/conditions/chronic-idiopathic-axonal-polyneuropathy

I also wanted to introduce you to other connect members @johnbishop, @artscaping and @mlmcg as they have experience with different types of peripheral neuropathy.

@jlind How have you been feeling? What are your symptoms?

Hi @jlind, I would like to add my welcome to Connect along with Ethan @ethanmcconkey and other members. I'm wondering if we should move your discussion into the following group where you can meet other members with similar symptoms where your post will have more visibility.

Groups > Neuropathy > Living with Neuropathy - Welcome to the group
-- https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I'm tagging @kevinking and @llhodnett who have discussed axonal polyneuropathy in a post and may have some suggestions. Also, I found the following publication that may be helpful.

European Federation of Neurological Societies/Peripheral Nerve Society Guideline on management of chronic inflammatory demyelinating polyradiculoneuropathy: Report of a joint task force of the European Federation of Neurological Societies and the Peripheral Nerve Society — First Revision
-- https://onlinelibrary.wiley.com/doi/full/10.1111/j.1468-1331.2009.02930.x

I'm hoping you can share your symptoms and any treatments that you have found helpful as Ethan suggests. That will help other members with similar symptoms share what they have found helpful.

Thanks, Ethan. Last summer, I had an episode of extreme muscle soreness and weakness. After consulting an arthritis physician and my general physician, I was referred to a neurologist. He did an office exam and then recommended an EMG. That was done in October and I was told I had no dreaded diseases. After some MRIs I had a follow up visit with my neurologist. He said that there was evidence of axonal polyradiculoneuropathy. However, because my strength recovered significantly, he said I might have had a mild form of Guillian-Barre last summer. My power in office tests was 5 - to 5. I work out daily at a health club, so that may be helping. The neurologist has postponed a spinal tap, but will re-evaluate that in March when I see him next. So, I'm a bit bewildered as to what to expect in the way of treatments and therapy. Any thoughts would be helpful.

I am a newbie to this site and to neuropathy. A month ago or so I developed pain in my right inner ankle. After a week I developed neuropathy. The dr. Did all the testsand did not find anything significant. I was prescribed an inflammatory. It felt better after a couple weeks and I thought it was manageable. Then it got worse. An X-ray revealed deterioration of the ankle joint due to arthritis. I am back on anti inflammatory, but the pins and needles and burning are horrendous. I can't sleep. I have an appt with an ankle and foot dr in a couple weeks. I am using diabetic cream, bio freeze, and over counter pain relievers but nothing is giving me relief. I am at my wits end. Should I be going to neurologist in addition to foot dr. .? Sorry but I am new to all this. Any advice?

Hello @deenie07, welcome to Mayo Clinic Connect. I have no medical training or background but the pain may be caused by nerve damage or compression of a nerve near the ankle. I think it would be good to discuss it with your foot doctor at your upcoming appointment. Have you had an injury to the ankle?

The Arthritis Foundation has some information on treating ankle pain that might be helpful.
-- https://www.arthritis.org/about-arthritis/where-it-hurts/ankle-pain/treatment/

You mentioned it felt better after a couple of weeks of taking anti-inflammatory medication but then got worse. Is your ankle still swollen or was it swollen?

Do not go to any run of the mill neurologist. They can have you running in circles. Make sure he/she is a specialist in your particular area. I wasted one year on a neurologist and now am seeking one who can actually help me feel better - and who cares. Good luck.

@deenie07 Welcome as John said We have chair exercises where I live,senior independent living .A friend of mine has neuropathy said in her feet firat time she did these exercises she raved abojt how it has helped her feet and ankles .Have you done feet exercises ? You tube has chair exercises you can do.