Today I went to be measured for Jobst compression stockings and when the certified measurer saw my legs, he said that it looked like lymphedema. He asked if I had ever had breast cancer to which I answered no. He thought I should see a lymphedema specialist (I didn't know that specialty even existed!) before getting any stockings.
I even have swelling of my right forearm. What the heck?
Do any of you have lymphedema? I'll see the specialist: Maybe it will lead to an answer.
Yes, you should see a specialized PT for lymphedema. My daughter has it in one leg and despite all kinds of tests, they never found a cause. Just completely idiopathic. (She doesn't have MS.) She got a lot of advice from the PT and got a compression thing for her foot, which helps.
I have lymphedema (mild) in my right arm just above the elbow. When I called it to my PCP's attention last year, not knowing what it was, he put his hands on both my upper arms, shut his eyes, and used his fingers to figure out what was wrong.
He said this often happens in cases of injury. I answered that 15 years ago I fractured that area severely, and had 3 surgical scars to show for it. One had 28 staples in it originally. My PCP said he didn't care how long ago it was or how recently the edema had shown up, lymphedema was the problem. Apparently there are only 2 remedies. One is to exercise the affected area as much as possible, to get all the juices flowing as best they can. (Sounds good.) The other is to wear a horrible compression thingie. Yuck.
A couple of weeks ago, while at my PT appt., I picked up a leaflet about lymphedema and put it in my purse. It was a few days later when I actually looked at it. There was a fair amount of info, together with a write-up about a lymphedema clinic at the hospital where I have a lot of tests done, and where my PCP is, among various other specialists I see. What totally surprised me, though, was a photo of my PCP, who apparently is the head of this clinic.
All this is totally off the subject, I know, but it goes to show he must know his stuff. Lymphedema has nothing to do with the central nervous system, but we certainly can and do have problems with more than one system.
Thanks so much to ashleyPT, Quixotic1, Nancy T, and essdipity who commented on my lymphedema question. It was a surprise to me - and is not yet confirmed by my PCP with whom I have an appointment next week.
Esdipity, you were so lucky to have a PCP who actually was an expert on lymphedema- no wonder he could close his eyes and use his fingers to pinpoint the problem. I hear it feels a little spongy.
Take note all you who suffer from lymphedema: This morning I read that one of the treatments for it is massage. Won't it be great if regular massage becomes a medical necessity for us lymphedema sufferers, covered by our health insurance!!!!
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