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?
Interested in more discussions like this? Go to the Neuropathy Support Group.
thank you so much for the prompt reply. my rehab consist of walking in a walker, standing as long as I can without holding on, with my eyes closed and open and many exercises to strenghten my legs. I have not had any skin biopsy. I just started LED light treatments ( own my own ) . I will follow up with John and jennifer.
I had a problem with lymph edema in the past. my edema tech told me i shouldd have an ultrasound on my legs to check my blood flow but my primary never ordered it. Is that something I need to request ?
@danpinc2022, I have lymphedema and have to wear compression socks to keep the swelling in the legs down. My cardiologist ordered the lymphoscintigram test as part of the diagnosis. If you are still having swelling in your legs it might be a good idea to have a discussion with your doctor or get a referral to a cardiologist for testing.
Mayo Clinic has some information on the diagnosis & treatment here - https://www.mayoclinic.org/diseases-conditions/lymphedema/diagnosis-treatment/drc-20374687
thank God, no more swelling
Interesting. What purpose does plasma injections serve in feet? I'm having age related problems with my feet. Toe cramps, toes tingling, and keeping my feet warm. I don't know anything about medical options for aging feet. My feet were always full with a natural high arch. Today they are pancake thin, I hardly recognize them.
I have just joined this group and would be grateful for any information regarding scalp neuropathy. I was not given anything further than the diagnosis and haven't been able to find much more. I only know that there is little feeling in some small areas of my scalp and I'm losing my hair. I'd appreciate any information anyone might have to pass along.
Hi, I'm new to to this group, a senior, I have neuropathy in my left leg that causes me some sharp pain, usually at night in legs (both) and feet and usually brief. My main concern now is scalp neuropathy that was diagnosed more than a year ago and apparently is related to the leg neuropathy. Those symptoms are lack of feeling in some areas and hair rapidly disappearing. I can't find any information about this. Can anyone help? Thanks.
Welcome @saki, Although I have neuropathy I don't have any experience with scalp neuropathy but did find some information on the topic.
"Can you get neuropathy on your scalp?
Structural changes in scalp epidermal and dermal nerve fibres were discovered in a skin biopsy, suggesting that small-fibre neuropathy associated with scalp pruritus may be a manifestation of the DM syndrome." --- Small-fibre neuropathy in a patient with dermatomyositis and severe scalp pruritus: https://pubmed.ncbi.nlm.nih.gov/27088428/
There are a couple of other sites that might be helpful for learning more and what treatments are available:
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
It sounds like you don't feeling any pain or tingling in the scalp, is this correct? Did your doctor suggest or mention any treatments that might help?
Thank you for responding to my post. Sometimes my scalp is a little sore and itching but there is no actual pain, just a continual loss of hair. My dermatologist didn't offer any further information or suggest any treatment. I got the impression there was nothing to be done. I will check out the links you provided , any information would be helpful.
Are you seeing a neurologist?
He needs to assess you pain, movement, muscles and nerves. Have you had any imaging such as MRI or EMG. Are you taking any medications for this and is it helping?
Neuralgia is very painful and makes life very difficult…..I am sorry you have to go through this….