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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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@mddeschamp7 you are a strong person to deal with so much pain with the small amount of meds you take!
Do you mean CIDP that @danawyn mentioned? That would be something you could discuss with your doctor if you think your symptoms are the same. Here's more information on the condition.
-- Chronic Inflammatory Demyelinating Polyradiculoneuropathy:
https://www.hopkinsmedicine.org/health/conditions-and-diseases/chronic-inflammatory-demyelinating-polyradiculoneuropathy
Ok, after seeing this video, I definitely don't have CIDP but now a question what is GBS?
Thank you for the added information.
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1 ReactionOk, I didn't recognize the initials. I know what that is.
I am hoping for some better information on relief from the symptoms.
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1 ReactionHello, this is actually two people. I have had chemo induced neuropathy for the past 13 years, worse now, since a return of cancer in 2019 and a second round of chemo. My husband has peripheral neuropathy in his feet and lower legs of unknown origin, probably age related (74 years old). We are encouraged to join the conversation and hope to find some strategies to help.
Good evening @keithandsue, welcome to the Neuropathy group on Connect. This is the first time I have had the opportunity to welcome a couple. Obviously, you two have discovered a number of issues that you shared and then also found symptoms that only affected one of you.
In 13 years what strategies have been the most helpful for Keith? What symptoms have been similar for both of you? Do you both have the same neurologist or clinical specialist? Hopefully, that will mean you are both on the same page and can help each other.
You may already know about the following two referral links. If not, it might be worthwhile to see what fits your individual situation.
Neuropathy Commons
https://neuropathycommons.org/
Foundation for Peripheral Neuropathy
https://www.foundationforpn.org/
Do each of you have different questions to ask? You can include them in the same response or separate them. We'll try to keep Keith's separate from yours Sue.
May you both be free of suffering and the causes of suffering.
Chris
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2 ReactionsI jus joined the group too and thank you for the sites for learning more about neuropathy.
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4 ReactionsThank you, Colleen. I was diagnosed with PN a couple years ago at Mayo Clinic and it has become more severe. I feel fortunate to only have to deal with it at night, when I have severe leg and foot cramps that continually interrupt my sleep. For the past week, I have been going to a chiropractor, who has completely eliminated the cramps with spinal adjustments, Tens treatments and the nightly application of a roll-on solution called Muscle Pain. It has done wonders for my sleep and attitude. I am a very active 115 lb. 77 year young female and am not ready to sit down. I know the condition will progressively get worse, but want to be prepared for what to do by reading this site to see what others are doing. Thank you for taking the time to help your community.
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