Lymphedema: A Growing Problem?
Now, I’m all for complimentary comments on my columns, and in the combative world the internet has engendered, the stroppy ones, too. But it’s when you lot start writing to each other that I know I’ve hit something. Which is a good thing, however irrelevant I then feel.
A while back, I wrote about having edema and amassed 55 comments. The most my column has ever attracted. Nearly all were about a shared problem.
I’m 6 feet tall and, therefore, have always had big feet — size 12. (No making up your own jokes, you in the back!) None of my shoes fit me anymore, as I’m now in size 16 clown shoes. As such, I’ve bought a pair of blue Converse kicks. I might as well look the part of a clown! MS may have taken away my ability to juggle (a skill I picked up in my theater days), but I am now at least the master of the pratfall.
Edema is not something I found much about while researching on the Net; there may be loads of info now, but this was in February. My general practitioner (the posh moniker for “your local doctor”) had little to say and put me on water pills (furosemide). Another doctor, while visiting me for something else, advised me to double the dose, from 40 mg a day to 80 mg. Which I obviously did.
Meanwhile, I fought to be seen at an edema clinic. Luckily, before MS, I was always a scrapper, which turns out to be an even more useful attribute when you get ill. It hasn’t been easy — all clinics seem engineered for patients with cancer!
I was first referred to a dermatologist who posed the relevant question of, “Why have you been sent here?” She turned out to be the correct stepping stone. In addition to prescribing me Eumovate ointment for my elongated skin, she referred me to an edema clinic. I needed a consultant to open the correct door. In army terms, the lieutenant sent me to the major who got peeved enough to write to the general.
It turns out water pills are useless. All they do is dehydrate you elsewhere and put a strain on the kidneys (I’d rather any strain is due to whiskey). Besides water, there are several other things in the lymphatic system. I apologize; there was a lot of information and I can only remember the word “protein.” I’m now weaning myself off furosemide, at 40 mg every two days. Otherwise, my legs will likely balloon up! I don’t have pitting edema, either — if you have it for any length of time, it’s lymphedema.
There is no cure; only exercise is a treatment! They weren’t keen on lymphatic massage, citing cost and efficacy. They were, though, very keen on swimming pools, as the pressure of the water is excellent, and for people like me who can walk in water, highly efficient.
I say “they,” as we had then been joined by the sort of expert who turns up on science fiction shows, earnest and passionate about his subject. He was right out of “Doctor Who.” He even wore a white lapel badge that said “Prof.” Rather conspiratorially, he pointed out there was no scientific evidence for this yet, but they are now thinking that MS itself may encourage lymphedema. The very processes of contraction that make the lymphatic system operate might be affected by MS itself. The British MS Society is presently funding research into this. Also, some of the drugs used for combating MS might exacerbate the issue.
There are only three lymphedema clinics in the U.K., and funded by money for cancer, they are geared up for that disease. I’d fought my way in, and I’m glad I did.
I’ve even done a bit more exercise!
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