RLS Neurontin,med combo's and stuff

[Guest guest]

Hello All,

So, how's things? Nothing shory of a controversy-I wouldn't expect

anything less from this group of intelligent people. I hope that some

researchers are tapped into this group, because there's alot of exellent

theories and simularities that are shared here.

Some one asked about Neurontin, also about med combo's. First off, when in

doubt, ask your Dr., Pharmasist, the med links to to a med check, etc.

Those that already know me, know that I have probably the most insofar as

med combo's-not by choice, but by neccessity. One of my meds is Neurontin. I

take 900mg tid, going on 2 yrs now. Yes, I did gain weight on this med. It has

also screwed up my menstral cycle, by making it very irregular. Prior to, I

was 28 days by the clock. No, it is not " menopause " . It was originally

prescibed for neuropathic pain, but it has not worked in that regard, yet it

has kept my kicking almost nonexistant. Although now, the RLS is in my arms,

to include when I'm sleeping going by my husbands observations. I can't

increase the Neurontin because it causes edema, so I tried in addition to,

Tegratol, but that made my legs more restless, so I am now taking Phenobarb.

My current meds are; Neurontin, Klonopin, Baclofen, MS Contin, Phenobarb. My

symptoms are still not under control and the continuous stress that I've been

under has only proved to exacerbate things.

I will not entertain the theory of injury vs heriditary at this point. They

both have validity, especially because mine is heriditary.I see how the

" Beast " is affecting 2 of my 3 children, knowing that there is no cure and

starting them with a Pedi-sleep clinic-it sucks! Also as a previous Dialysis

Technician, I've seen too many of my paitents going untreated for RLS even

though I was living proof that this " Syndrome " exsists and I often brought in

literature for both the patients and the nurses/Dr.s But you know what?,

except for the patients, the nurses and Dr.s " had the attitude that they knew

it all and paid no heed to the facts. Sound familuliar? I would suggest that

any of you, whether non-med or med, carry the literature that the RLS

Foundation has to offer. Show it to co-workers, family, friends, dentists, any

Dr. that you go to-you'd be surprised at how ignorant the general population

is, not excluding the medical proffesion. Been there, done that, still going

through that... don't get frustrated, educate these poor souls!!

My new point of " interest " is directed at the S.S.A. in the way they conduct

their determination of disabitities. I keep getting told that they want to

make it difficult in order to " weed out the frauds " ! Well, they're causing

undue hardships on those who truely need it.There has to be a way that this

buacracy can expedite these reguests and " weed out " at the same time. I'm

going to quit while I'm ahead because I'm afraid that I could go on, and on,

and on, and on,.....

Take care all and hopefully, I can get to use this 'puter alittle more

often. Until then, sleep well.

le , 37, R.I.