Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@ethanmcconkey

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?

Jump to this post

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.

REPLY

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?

REPLY

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?

Liked by lioness

REPLY

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.

Liked by lioness

REPLY
@deenie07

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?

Jump to this post

@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.

REPLY
@ospreysurf

Another little hint , at night if i cant get to sleep, the worst time for me, i put my feet in a pan of ice and water for maybe 15 minutes and that gives some relief to go to sleep. Rob

Jump to this post

I’ve found that Biofreeze helps with the pain. I use it liberally and you can buy a gallon bottle with a pump off Amazon. Not cheap but the cooling relief it provides is better then anything else on the maket.

REPLY
@dwilkin

I’ve found that Biofreeze helps with the pain. I use it liberally and you can buy a gallon bottle with a pump off Amazon. Not cheap but the cooling relief it provides is better then anything else on the maket.

Jump to this post

I have tried everything, I use Ebanel numb 520 it’s lidocaine 5% in a cream you can buy it on amazon or Ebanel direct site,it can be used 6 times a day I found it to be the best

REPLY
@friendz4

I have tried everything, I use Ebanel numb 520 it’s lidocaine 5% in a cream you can buy it on amazon or Ebanel direct site,it can be used 6 times a day I found it to be the best

Jump to this post

Hi @friendz4, welcome to Connect. Thank you for sharing what helps you. I only have numbness with my small fiber PN. Are you able to share a little more about your diagnosis and symptoms?

REPLY

Tks for having me!

REPLY

Hi John, yes after being bounced around for 3 years every test and blood test possible, this is what my nerologist believes I have SFN or CIDP, he wants me to go for plasmapherisis I am not sure I want to do it,

REPLY
@friendz4

Hi John, yes after being bounced around for 3 years every test and blood test possible, this is what my nerologist believes I have SFN or CIDP, he wants me to go for plasmapherisis I am not sure I want to do it,

Jump to this post

Hi @friendz4 it's good to ask questions. I'm assuming you told your doctor you are not sure about the plamapherisis treatment. What did he say? I was not familiar with the treatment so did a search. I have no medical training or background but reading about it may help you feel a little more comfortable with it.

Plasma exchange treatment of peripheral neuropathy associated with plasma cell dyscrasia.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1027944/

Plasma Exchange in Neuroimmunological Disorders
https://jamanetwork.com/journals/jamaneurology/fullarticle/791917

Plasma Exchange for Peripheral Neuropathy
https://nyulangone.org/conditions/peripheral-neuropathy-in-adults/treatments/plasma-exchange-for-peripheral-neuropathy

REPLY

I read online that 24 million people in the US suffer from neuropathy. Do you think that's accurate?

REPLY
@pfbacon

I read online that 24 million people in the US suffer from neuropathy. Do you think that's accurate?

Jump to this post

@pfbacon I've read similar numbers. NIH says it's "more than" 20 million but I don't know where they get the numbers. I've also heard it's more than 80 million world-wide.

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

REPLY

That's a lot. I hope that brilliant researchers get busy inventing better medicine for us. When anything new is invented, we'll hear about here before we hear about it anywhere else, right? (To me, "Better" means something that takes away the pain and numbness but doesn't make us sleepy or fat).

REPLY
@johnbishop

Hi @friendz4 it's good to ask questions. I'm assuming you told your doctor you are not sure about the plamapherisis treatment. What did he say? I was not familiar with the treatment so did a search. I have no medical training or background but reading about it may help you feel a little more comfortable with it.

Plasma exchange treatment of peripheral neuropathy associated with plasma cell dyscrasia.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1027944/

Plasma Exchange in Neuroimmunological Disorders
https://jamanetwork.com/journals/jamaneurology/fullarticle/791917

Plasma Exchange for Peripheral Neuropathy
https://nyulangone.org/conditions/peripheral-neuropathy-in-adults/treatments/plasma-exchange-for-peripheral-neuropathy

Jump to this post

Thanks so much for the information , I let him know I will think about it,he put me on prednisone pack and it’s actually making me much worse,I don’t know what I will do but I will keep you posted,I am very sensitive to meds,so I might have problems with the plasma also,I think some drs drive you crazy that’s where I am at now as I should have had a proper diagnosis a long time ago

REPLY
Please login or register to post a reply.