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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?
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larrymc - I just joined this group, and yours was the first post I saw. I was diagnosed with anti-MAG several years ago. Beginning this July, I started a IVIg treatments. I had about 10–12 infusions, and met with my neurologist on Monday for testing to determine if there has been any improvement or change. The conclusion is - no, there has been no improvement, and therefore, I've discontinued this treatment. I would add that there were no side effects, so the procedure was quite benign for me. I'm glad I tried it, now I know that it's not an option. Next on the list of possible treatments is plasma exchange, or plasmapheresis. I'm still exploring this option, and will be investigating whether my insurance company will cover the cost. All of these choices, including immuno suppressant options, need to be continued for years and years, if they prove helpful. At least that's my understanding.
Does anyone have any experience with plasmapheresis? It's a bit more invasive than IVIg, as a catheter is required. Any comments on this topic? Thanks.
Hello @betoma, Welcome to Connect. I'm not sure @larrymc saw your reply to his post. He did share an update in another discussion here - https://connect.mayoclinic.org/comment/608152/. There is another discussion started by @rwinney on plasmapheresis you might find helpful -- Plasmapheresis - anyone had success?: https://connect.mayoclinic.org/discussion/plasmapherisis-anyone-had-success/
There is also a YouTube video from Apr 6, 2010 by Brian Weinshenker, M.D., a Mayo Clinic neurologist, describes the process of plasma exchange in treatment.
Are you able to share a little more about your symptoms and anything you have found helps a little?
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1 Reactionthanks John - this was helpful
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2 Reactions@betoma I never received plasmapherisis, but researched it as a possible assist to pain. My conclusion was that it did not work for everyone and was tough to get insurance coverage for. Best of luck if you are trying it.
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1 ReactionMy name is Margie I am 74 and I am quite active walking,working ,bowling,dancing ,doing qi Gong But I do have anxiety..I was diagnosed today by a poditrist with the beginning stages of neurapathy He called it low pain or low grade neurapathy . I dont know anything about neurapathy or why I got it as I don't have diabitis.
I just woke up one morning in August with a sandy feeling in both feet from toes to heal.
No pain just a sandy feeling. I was told to buy foot insoles to see if that helps and
if it gets worse to go back. Any suggestions on what I can do to improve
my situation would be greatly appreciated. I,m feeling so lost...Margie
Hi @margie1234, Welcome to Connect. It's great to see that you are searching for information to learn more about neuropathy and possible treatment options. I have no pain with my neuropathy either. I only have numbness. I think what you are saying is that it feels sort of like you are walking on sand which is sort of the way my feet feel sometimes. While we wait for other members to share suggestions with you, I can recommend that you learn as much as you can about neuropathy, it's possible causes and any changes you can make to your lifestyle that may help. It sounds like you are already active and healthy so you are ahead of the game from where I started my neuropathy journey. Here are a couple of sites where you can find more information about neuropathy.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
Do you have any pain or numbness in the bottom of your feet?
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1 ReactionI have small cell neuropathy. My neuropathy is opposite of most as I have extreme pain instead of numbness. My Drs don’t know what to do with my pain. My pain is sharp pain in my legs and arms. My pain is causing me not to be able to work.
Hello @jansendscards, Welcome to Connect. I'm sorry to hear that your doctors haven't been able to help with the pain from your neuropathy. You may want to read through the discussion Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/ to learn what other members including myself has shared that has helped them.
The Foundation for Peripheral Neuropathy has some information on alternative and complementary therapies that you might find helpful here https://www.foundationforpn.org/living-well/integrative-therapies/.
You mentioned your doctors don't know what to do about your pain. Were you prescribed any pain medications by your doctor or neurologist?
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1 ReactionYes I am on Percocet, and lyrica. I am allergic to many meds.
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1 ReactionI have tingling on the bottom of my feet No pain or numbness
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