Hi Irena
Welcome to the mad mad world of RLS....and whatever else your body decideds to throw at you at the same time
Sinemet is a good drug, but is reknowned for it's augmentation problems (i.e. your body getting used to it); however, it's not uncommon to have a "drug holiday" from one drug, use another drug for a few weeks and then go back to the original one, particularly if you were having success with it. It's something to keep in mind as an option.
When my RLS first hit it was in both legs and both arms. My arms are under control these days, but my legs, well, they just don't want to do what they're told (actually when you think about it, it's the brain that isn't doing what it's told!).
I don't think i've heard of anyone else's hands swelling from RLS. You definietly should get that checked out, just to be sure.
Below is an extract from the rlshelp.org website on the topic "What is the
Restless Leg Syndrome (RLS)?"
"RLS occurs most commonly in middle age and gets worse as one gets older. However, a large portion of patients (up to 43%) may have onset of the disease before age 20 (and often as a very young child). A family history is found in over 60% of RLS cases and new evidence point out possible linkage to chromosomes 5 and 10."
I had RLS as a child 20yrs ago, but noone could put a name to it then and it was put down to growing pains. It eventually disappeared only to rear its ugly head with a vengance last year.
After I was finally diagnosed with RLS a number of family members came out of the "woodwork" to identify themselves as fellow RLS sufferers. So far, I'm the only one in my generation to get it. Out of my mum's generation, three of them have it (including my mum), but to varying degree's. My mum's brother has it the worst; mum & her youngest sister have mild cases. In the generation before that, my
mum's father had it the worst. I can remember that for as long as Grandpa was alive, he never ever slept more than an hour or so a night. We believe he died not knowing that he had RLS. He has a brother and sister with RLS as well.
So, it definitely runs in the family here and i've resigned myself to the fact that if we ever get to have children then i'm more than likely going to pass it on to at leastt one
I have not used Neurontin so I'm not able to offer any advice. I've had the opposite problem with being on Cabaser and losing weight through a complete and utter loss of appetite. I've shed 28kgs so far. It sounds like a great thing, but it's not been fun.
Hope I've been able to shed some light on your questions for you.
Take care
Nadia
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