Hi there, I thought maybe some people newly diagnosed might take heart from my experience. After a couple of years of misdiagnosis and inappropriate treatment, last summer I finally got a diagnosis of lymphoedema in my right leg and groin. I was able to get a referral to the local community service (specialist nurse), who measured me for a prescription of full leg flat knit made to measure stocking and toe caps. She also recommended a referral to St George's for lymphosintigraphy (not available in our area), as the cause of my lymphoedema was unknown.
Since then I've been wearing my stocking etc every day without fail. I've been remeasured 3 times and each time has seen a good reduction in my leg swelling. Now down from 60% to 35%, and I'm hopeful of the reduction continuing. I've just had an appointment at St George's and am waiting for the results.
Alongside this, I've prescribed myself daily exercise, and set myself a 100 day challenge that I successfully completed. Exercise is now a routine part of my life, and will continue to be so.
My current self-challenge is to lose a stone, over a period of some months. I'm not overweight, but am at the higher end of the healthy weight range for my height and build, and I think it would be helpful to shift into the middle or slightly lower.
I can't tell you what a delight it has been to find that over the course of just 6 months I've moved from a position where walking distances was positively harmful to my leg, to the current position where walking is positively good for it. I can happily walk up to about 13 miles a day if I want to. At 63, I'm a fit and healthy woman, and want to keep it that way.
I can't thank the people here, and at LSN, and my wonderful specialist nurse Paula, and the people at St George's, enough. I also know how fortunate I am to have had access to all this treatment on the NHS.
Newly diagnosed, any advice?
Newborn with lymphoedema
Update on Footwear for Primary Lymphoedema in legs and ankles
