Living with Neuropathy - Welcome to the group

My name is Kathy Vienna( I believe my on line tag is #kvienna)
I haven't been on in a while. Just checking to see if there is any new information on CRPS. I explained before that I developed it in my rt. foot in 2007 after a major back surgery.(My 5th back surgery since I had harrington rod placed in 1969. The pain has now spread to my knee. Terrible nerve pain, weakness, numbness, balance issues. (I am now using a walker) I started developing numbness in my left foot this past January after I had surgery to place a rod in my left femur after developing an atypical femoral fracture from taking Prolia for osteoporosis . My pain dr. is sending me to a "Naturalist Dr." who can help me decide what kind of medical marijuana I should try. I am taking so much medicine now that only "touches" the pain and for only a short time. I am hoping marijuana will due a better job.

Marijuana will help. Maybe not in the ways you are hoping. There are many types available. I find green weed, the kind you roll in a joint works great for many people and others do well with edibles. CBD Oil benefits many others need the CBD and THC Oil. I personally use concentrates called shatter. Here is how it works for me. I have a genetic wasting neuropathy and I find it relaxes me and allows my prescription meds do their job better. If you are considering adding Marijuana to your regime remember there are many ways to use it and it works different for each person so don't be afraid to keep trying until you find what works best for you.

Hi everyone, I believe I have neuropathy in my feet but my orthopedic doctor has diagnosed it as Reynaud's. But th skin on my feet in winter or when it's cold do not appear to whiten. Is his diagnosis incorrect?

Hello @psearby17 - Welcome to Mayo Connect. We are happy you found us. Connect is a good place to ask your health related questions and learn what other Connect members with similar health concerns do for treatments. I have peripheral neuropathy (PN) in both feet but I believe the only way to tell whether or not you have PN is to have an EMG test to check for nerve damage. Mayo Clinic has a good overview of Reynaud's disease here:
http://www.mayoclinic.org/diseases-conditions/raynauds-disease/basics/symptoms/con-20022916

Also here is an easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin: https://youtu.be/8nrv7lRvvwU

John

Hi @bburleson1
I encourage you to start a new discussion about living with POEMS syndrome in the Blood Cancers & Disorders group https://connect.mayoclinic.org/group/blood-cancers-disorders/ to help connect people living with this rare disorder.

Thank you for your reply. This is a frightening condition. I am active and have been so active all my life, people tell me I may end up in a wheelchair like them. obviously people whom I have met who are in wheelchairs.

Thank you so much for your reply. I an seeing a neurologist and am on Nadnlol ( RX) It seems to help now but have had to increase the dosage. I pray you are doing better

Delane - Well, the people telling you where you might end up lacks a positive spin, I think. So here's a different take on it - maybe soon medical science will accomplish another miracle and PN and its "similars" will be a thing of the past. In the meantime, we all may end up in a wheelchair at some point. At the risk of seeming "Pollyanna"ish, I am glad someone invented wheelchairs so when we find them necessary, we can go on enjoying our lives, eating good food, laughing with friends and hugging loved ones. You are so right - it is a frightening disease but be assured with as many of us as are affected, someone is trying to figure out how to fix it. I hope it's soon, though - I'm 81 and I'd like to see how much of all this input is making some kind of sense to those whose job it is to stop it.

I'm Birdie. I have neuropathy, primarily numbness, in my feet from a 10 year delayed diagnosis of pernicious anemia. When B12 is not absorbed into the body over a long period of time, nerve damage occurs, and some is not reversible. I also get shooting nerve "zaps", some quite forceful and various burning and itching in legs, hands, and feet. Other damage is the result of two meniscus surgeries, one on each knee, and moderate to severe osteoarthritis in my neck. Recently I have developed a burning mouth as well.

Hello Birdie (@bookworm), Welcome to Mayo Connect. We are glad you found us. Connect is a good place to ask questions, share your health concerns and learn what other Connect members with similar health concerns are doing for treatments. I would recommend reading through this discussion starting from the first post (just go to the top and click First at the bottom of the discussion description. If you see a post by a Connect member and want to ask them a question, just use their Connect name which has the "@" sign in front of it.

I have idiopathic small fiber peripheral neuropathy along with a few other health issues. You can read my story here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985

Can you share what you are doing to treat your neuropathy and other symptoms?

John