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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Apr 25 10:43pm | Replies (5972)

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@summertime4

Hi everyone. I a looking at the exercise above and have tears. I few years ago that would be no problem. Now I can hardly get up from a sitting position. I believe this is in part due to lack of activity for sure. I stopped going to my aqua fit pool exercise after told I needed lymphedema therapy. Lyphedema therapy is not done in the same place and I had to travel and they did not use water therapy. As I had said previously I was diagnosed a few months ago with lymphedema and then peripheral neuropathy. The vein doctor said I had lymphedema but never tested as to why as I did not have cancer. After I questioned he said I should have had tests I am having a CAT scan with contrast tomorrow. These last 8 months have been a nightmare mare. I could go back and say 16 months as that is when I lost my husband to stomach cancer. I knew I had neuropathy long before I had the nerve conduction test. Always had problems with my legs and some swelling in ankles. About 8 months ago my left foot, toes, ankle and leg started swelling and the pain is intense. No one can tel me why. I have been to two vein doctors and I do have venus insuffiency and neuropathy and now according to one lymphedema. I have referred to a orthopedic surgeon who asked why I was there. Yup. He did. Told him what doctor sent me.I do have osteoarthritis in my toes and foot and am told that shouldn't cause this much pain and neither of the diagnosis should cause this much swelling. One doctor said "I;m stumped" ANA blood test was positive with titer of 1:80 speckled which is on the border of autoimmune disease but neurologist kind of blew it off until I told her about rashes I have and she said I probably should see a rheumatoid doctor, a hemotologist and an infectiousness disease doctor but never gave me a referral. The one vein doctor is sending someone out with a pump for my leg to use at home. I was in lymphedema therapy for a month and they used one. The neurologist said someone should have been looking at this because it is only on one side. I must admit her questions and answers concerned me about cancer and she said the C word. That is how she said it. I have pushed myself in a dark corner and am finding it difficult to get out. The pain and swelling keeps me down alot so between being alone and losong mobility I am struggling. I have never had to rely on doctors or been to so many or been in this much pain for so long. I have been fortunate I agree. Right now though I am not seeing light in this tunnel. Thank you for reading this. I give you all so much praise and keep all in prayer.

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Replies to "Hi everyone. I a looking at the exercise above and have tears. I few years ago..."

Hi @summertime4, I know it can seem overwhelming sometimes but hopefully they will find something that helps with the lymphedema. I would keep asking questions and being your own best advocate. My lymphedema is primarily in my right leg and I wear compression socks which helps with the swelling during the daytime. At night when I take them off and am laying down it doesn't seem to swell since it's easier for the lymph fluids to be pumped up and out of the system from the feet/legs. I had thought about getting a pump for my leg to use at home when I'm working on my computer but the socks seem to be doing OK for now.

Can you can give us an update after your CAT scan and contrast? If I'm not mistaken the contrast part checks to see how the lymph fluids pass out of the body to see if there is any blockage.