Living with Neuropathy - Welcome to the group

Hi Scott,
I am relatively new to mayo connect (about 6 days ago) and I was given the same identical diagnosis by Mayo in MN. I said axonal what?? My motor skills in both legs is the biggest challenge. Mayo told me not to take Lyrica and Gabapentin created angry issues. I find it frustrating because I do not know of anyone else that has this and I reside in a low populated beach community. No known cause for me means no treatment plan. Most things, I've found out on my own. Neurologists kind of shrug their shoulders. So, you are no alone with this and I hope you can manage through this. Not easy, that's for sure.

Welcome @leonallison662, You are so right about the many, many causes of neuropathy. I'm thinking even my idiopathic small fiber PN doesn't mean it is without a cause...they just don't know what it is. How about you, have you been diagnosed with neuropathy?

Thank you for doing this. I have been dealing with neuropathy and other nerve related issues for 40 years with very little relief. I hope this will help.

Hi @rocketdad, Welcome to Connect. Sorry to hear that you have been dealing with neuropathy and other related issues for 40 years with not much relief. There is a lot of information out there but you really have to do your research and find reliable sources. Here are a couple in case you haven't seen them.

-- Neuropathy Commons: https://neuropathycommons.org/index.php/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/treatments/

Are you able to share a little more about your diagnosis and the symptoms that are most bothersome?

I began to have numbness in both feet and one calf after ankle surgery. In the Nursing facility, I complained about the pressure on my lower back, but no one offered to make me more comfortable. Recently, I have been diagnosed with S1 Radiculopathy. I have gone to a chiropractor for a month which has not helped. I am so depressed about this as I always feel like I’m wearing a high boot on my right leg. At night, my feet get hot. I’m seeing a Neurologist at Mass General Hospital and hope and pray this condition can be healed!

Hi @marksmom, Welcome to Connect. I'm sorry to hear you haven't gotten any relief yet. It's good to hear you have an appointment with a neurologist at Mass General Hospital. Hopefully they can help you with a treatment for the S1 Radiculopathy. From what I've read surgery can help but that might be a question when you have your upcoming appointment.

"Corticosteroid injections reduce pain by suppressing inflammation around the irritated nerve. This is an excellent treatment for L5 or S1 radiculopathy when other conservative, nonsurgical treatments have not worked. There are generally two reasons for surgery. The first is significant weakness, such as a foot drop."
--- Sciatica and radiculopathy: Peculiar names for shooting back, leg pain: https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/sciatica-and-radiculopathy-peculiar-names

Do you have any pain with the right leg and lower back?

Yes, I have lower back pain at times. I believe My nerves were damaged from compression while in a hospital bed at a nursing facility. My leg was raised and back was raised creating pressure especially on my lower right back. Thankfully, I don’t have any pain, just numbness which is enough to get me very upset!
Thank you for the information! Blessings to you!

Left leg and back. Excruciating pain

No. I only have pain in the left leg and left back right and left on neuropathy

You might want to write down a list of questions on possible treatments to ask in your upcoming appointment with the neurologist at Mass General Hospital. This site has some good information on how to plan your conversation to get the most from an appointment.

Tools for the visit - https://patientrevolution.org/visit-tools