listen up, guys...........Mom here.........

[Guest guest]

Happy Thursday to all.......

This is going to be a little discombobulated because it's right off the top of

my head and I usually like to take my time with important letters......but

today I just want to pass along a few things that are going through my mind

right now......

In my estimation, we're just trying too darned hard. I don't think we need to

CHANGE anything. IMHO, we don't need another page to list what we are doing

and how well it worked. That's what this group is for.....our letters back

and forth every day. I don't think it's going to be that easy, where we can

just list everything that everyone has done and stand back and say " Ah Ha!!! "

....because the same thing is never going to work in the same way for everyone

all of the time. There are just too many variables........we have answered

every question that Jill just asked several times over in the past few months.

Half of us can take something when we feel a bad attack coming on......the

rest of us must take our meds strictly by the clock. Most of our medications

should be taken regularly I believe, to keep us on an even keel. I would

think the anti-convulsants and dopamine drugs would work best this way. .But

it's entirely possible that you could take a benzodiazapine such as Klonopin

or Xanax on an as-needed basis, and get by. I am using codeine in just this

way at the present time. I take no rls medication for now on a regular basis.

If I have a problem, I take a codeine and some extra-strength tylenol. Works

for me......................I'm not the professional though, Dr. Levin will

have to have the final word about medications.

Always read the literature that comes with any type of medication that you

take...even a " natural " supplement. This should tell you whether or not you

have to be careful stopping it. I believe it goes without saying that any

serious drug that has been taken on a regular basis should be stopped

carefully.

I don't mean for it to sound like I'm dismissing the suggestions that have

been made here today.......I know they are meant with the greatest of

intentions for the benefit of all concerned. But I just really think that

we're trying to analyze too much.....we don't want to say anything too

negative, that might discourage someone from their mode of treatment. We

don't want to say anything too positive, because that might give false

hope........let's just stop worrying about making things perfect and continue

to share our successes and failures with each other......for as long as they

last. Face it, guys......as of today, there is no PERFECT.

I quite probably will be blasted for this from all angles ......and I'll take

all comers.......but I honestly do not believe that it is ever going to be cut

and dried for each and every one of us. We are all going to have to do our

own research and decide how much risk we want to take in our quest for relief.

If it turns out not to be so good, then we have to start all over again and

try something else. As new research unfolds, we will have that information

here. There are people in this group who are keeping a finger on all of the

major rls hospitals and research facilities.

There are plenty of sites on the net listing every possible type of treatment

and medication.......both traditional and alternative. Jodi's site is her

personal space....

a tremendous portion of which she has dedicated to Restless Leg Syndrome. I

do not believe we should presume to tell her that she can't have any fun with

it and should spend even more of her precious personal time keeping a

medication journal for us. We should each be keeping our own treatment

journal. If you need an update or have a question about ANYTHING, throw it

out to the group.......you will get PLENTY of answers! The personal pages

that Jodi has provided for us contribute to making our group the big, happy

family that we are.......:-)

I think it's important that we realize we all have more to our lives than rls.

We want to deal with this in the most efficient and safest way possible. We

want to be here for those of us in crisis or new to the group, just beginning

to find answers. We want to do what this group was meant to do......inform

and support. And we ALL want to do our part and not put too heavy a load on

Jodi .........

I will be happy to discuss this further with anyone interested in doing so,

and look forward to everyone's input.

Have a good day........and night........

Most sincerely,

Connie

[Guest guest]

Good for you Connie. I like the way you tell it like it is.

Larry Gibbens 60 Baldwinsville, NY