Connect
← Return to Living with Neuropathy - Welcome to the group
Discussion
Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
Sure. Last June it started with just numbness in my left foot. No pain. By November I had numbness in both feet with pain in my arches, electric shocks (only in right foot) burning sensations in my tailbone area. By Jan I was having sciatic pain down both legs. After EVERY test in the book to rule out things (minus spinal tap) I was just dx this May. In the last month, my symptoms have “quieted” but not gone away. Every day is a mystery of how I will feel.
If you don’t mind as well, What type of neuropathy are you dx with and what are your symptoms?
Replies to "Sure. Last June it started with just numbness in my left foot. No pain. By November..."
Oh! So different than my symptoms. I've only had an EMG and was diagnosed with Peripheral Neuropathy. Sharp, achy, pins and needles, but no numbness until this last year. It's now migrated into my ankles, up my calves and into my knees. I also have swelling of feet and ankles.
I do have to preface this by saying, I had a toe surgery in 2000 that progressed to CRPS (best to look it up - it's kind of complicated to explain) in both feet. I then developed Lipodermatosclerosis (LDS) about 5 years later. Lipodermatosclerosis is often seen in vascular insufficiency, but all tests were negative for vascular disease, so it was attributed to the CRPS. The doctors I've been to over the years have never seen CRPS, Peripheral Neuropathy and LDS all together. They all produce severe pain in some form or another with no cure, so the only real goal is to reduce the pain - which brought me to this sight.
I also just was told my Vitamin D level is 2!!! The doctor said that this can cause pain, numbness, tingling and weakness. I was started on 50,000 iu of Vitamin D3 once a week which immediately made my symptoms increase 10 fold!!! Which I guess is common. So.... my goal right now is to help my pain as much as possible. Thank you for your response!
Connect
Hello @carlyschneider, Welcome to Connect. I see that you recently joined and shared that you were diagnosed by a skin punch and an antibodies test which showed higher level of TS-HDS antibodies. Are you able to share what diagnosis you were given and what treatment was recommended or started?