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N G
Hello, fellow lymphedema warriors! I have Multiple Sclerosis and a few years of being unable to walk started the swelling in my feet and legs. I had no health insurance and couldn't afford doctor visits or anything, so the problem just got worse until the lymph vessel valves all became permanently damaged. After Obamacare I finally was able to go to doctors but the damage was done. Now I wear velcro foot and leg wraps 24/7, always.
September 26, 2018
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joan camenson
How do I change my birth date on this site? It is down as August 13, 1944. Correct date is September 13, 1944.. I just had a birthday, so I am now a young 74. I was first diagnosed in 2017, but I think I had this condition way before and no one in the medical field - not my dermatologist, gynecologist or primary picked it up. I go for frequent check-ups for different conditions and all of these people saw my legs, but no one said anything. I had never even heard of the word lymphedema, and didn't know anyone who had this condition, either. So, what happened was I was being treated by a different dermatologist for the psoriasis on my legs - which is another auto immune condition that I have dealt with since my mid 40's - with a laser (which wasn't working anyway) and she took one look at my feet and said, "I think you have edema. We are stopping treatment and you need to see your primary asap." So, I see the primary, and he said, "Yes, you have lymphedema," and immediately arranged for me to be treated at The Lymphedema Institute, here in Houston. I saw their doctor, got approved, and I was off to the races in a manner of speaking. I did all my treatments, did the pump 2X a day, and got released after 18 treatments. I was taking care of this condition as best I could at home, the pump, diet, walking, and then Hurricane Harvey paid a visit, and water got into my home (this was because the Army Corps of Engineers released the dam so that downtown Houston would not flood), and the water made its way to homes that had never ever flooded, like me. Fortunately I had flood insurance, but I still had to be out of my home for over 3 months and could not use the pump which was now in the garage. My legs swelled up again, I went back to my primary, he approved me for treatment once again, then had to fight Medicare for 3 months to get approval, and then was finally approved, completed 15 treatments, and am now am doing home care. My big concern now is finding a qualified Lymphedema Massage Therapist. I will have to pay out of pocket because insurance only covers these massages while I am being treated, which is a bizarre situation to me, but what ever. I did "find" one such therapist on the internet which in my mind is no way to find any health care professional, but I never
went over because she wanted $185/hour. I did send an email to a massage therapy school located in my area, but they never responded, so my guess is that they don't train people to do lymphedema massage therapy. Any suggestions as to where I might find a certified Lymphedema Massage Therapist? Thank you, and thank you, Margaret Webb for the friend add.
September 15, 2018
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Kim Westall
Not sure how this community works but I need to change my email address.
September 16, 2018
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linda e
so i have had lymphedema in both legs since at least 2014. It was misdiagnosed a couple of times, I was given advice to take water pills and sleep more. Finally another doctor who was listening in on that last bit of advice, sent me to a specialist who diagnosed me and put the fear of the Almighty in me about scratching the rashes i was getting (you all know, you dont want to break the skin) So i am fortunate, we have specialists here, and therapists, Even so, you are mostly on your own with this. I have periods where i lose ground and periods where i stay even, Times i don't feel like trying and times i over-do it. Sometime on the same day. I am trying physical therapy again, Starting with water therapy, which is going well. I highly recommend it.
September 14, 2018
