Hello Board Buddies--I'm just jumping right in here..

RestlessNGa · Post by **RestlessNGa** » Tue May 17, 2005 7:23 pm

Hello, I just found out recently that I do not have MS...wooohooo!!
But I do have RLS which makes me look like the Tin Man jerking all around at times. lol

I just wanted to learn a little more about this thing that makes my limbs jerk all over the place...I was diagnosed with MS about 3yrs ago...
went through all the treatments...

Walaa...I was assigned a different Neurologist and "you don't have MS."

Looking forward to getting to know all of you...I was at MS World but I had to leave

all my buddies behind. I can still visit though.

I am taking Requip...was wondering if anyone else is taking and how it works for you?

Thanks
Patricia

Penguinrocks · Post by **Penguinrocks** » Tue May 17, 2005 8:28 pm

Welcome Patricia and congrats on your diagnosis!

1/2 the battle is knowing what you have eh?

I started Requip. It's not working. I'll have to wait to see my neuro in June.

Again Welcome

Loves
Penguin

Post by **ViewsAskew** » Tue May 17, 2005 8:45 pm

Penguin, how much Requip are you now taking? If I remember, it's a slow titration process. Requip requires 2 to 4 times the amount to work as does Mirapex, so people can get some high doses. Since you have to wait several days before titrating to the next dose, it can take several weeks to get to the right dose.

Also was thinking that I don't know anyone with severe RLS that gets by with just one drug. We all take a cocktail. It's figuring out the cocktail that can take so long.

Patricia - what a lucky lady you are today! Finding out you do not have MS must be a joyful thing. Hope the Requip works and welcome to the group.

Ann

Penguinrocks · Post by **Penguinrocks** » Tue May 17, 2005 10:02 pm

oh. i will try it then again.

i can take up to .75 mg.

Thanks Peeps!

Loves
Penguin

Post by **ViewsAskew** » Tue May 17, 2005 10:13 pm

Penguin, .75 is not much at all. Did your doctor tell you not to go above that or did you have problems with it? I wouldn't consider that a test of whether or not it worked unless you had other issues and had to stop taking it because of those.

Please go look at www.rlshelp.org. There is good info there on dosages and you can see that you could certainly take more than what you are taking.

Ann

Penguinrocks · Post by **Penguinrocks** » Tue May 17, 2005 10:15 pm

Hi Ann and thanks
She told me not to go over. Until our next appointment anyway.

Penguin

Guest · Post by **Guest** » Tue May 17, 2005 10:28 pm

Thanks for the welcome...

Viewsaskew...did you say cocktail!!???? Oh, not a mixed drink I take it. lol

I just went through that with MS...let's try this and this and little of that.
I actually was feeling better, until a few months ago...then nothing seemed to work.

I am now off all medication except the Requip and Tramadol if I need it.
However, I do have a whole big medicine bag of drugs left over. But I am going to try to do what this Neuro said.

Penquinrocks...I sure hope you get relief soon, 'cause it sure is miserable when every muscle feels like it got hit by a Mack Truck.

Thanks again for the welcome.
Patricia

Post by **ViewsAskew** » Tue May 17, 2005 11:55 pm

Ha! I bet if all of us got together we could start a pharmacy! I have oodles and oodles of things that didn't work. Thank goodness I have a prescription card with my insurance.

Ah, Penguin, now I get it. I think you said your appointment wasn't until June. . .this is a neuro, isn't it? I don't usually generalize, but of all the specialty docs I've had the pleasure to visit, the neuros seem to play hard to get the best :lol:

. I've had to wait 5 months to get to see one, another made me wait 4 months inbetween appointments when we were trying new things and she had no way of knowing how it was going in between ans didn't care I'm guessing. The one I have now never returns a call. I leave messages with her nurse, her nurse asks her the question, and then her nurse calls me back. So if I have a question about what the doctor said to the nurse, the nurse has to hang up, ask the neuro later and call me back again the next day.

I suppose she's not willing to talk to you in between visits is she? Maybe if you leave a new message there every day she'd eventually have to do something!

Ann

Penguinrocks · Post by **Penguinrocks** » Wed May 18, 2005 12:32 am

I dunno Ann,
We are brand new to each other. I guess it won't hurt to call and see eh?

Thanks
penguin

RestlessNGa · Post by **RestlessNGa** » Wed May 18, 2005 2:48 am

Ann, did we have the same neuro at one time...no couldn't be, mine wasn't female. lol

I called and never spoke to him, always his assistant and would have to wait forever for a call back.
The second one I was assigned(1st quit practice) was a little better about returning calls.

I haven't called this one yet...have to wait and see.

Penguinrocks...I would call, she needs to know it "ain't workin" and keep calling until she tells you to come in or does something different. Most neuros I know believe in the "tough it Out" syndrome. lol

I just took the dosage for the Requip, will let you know how it works tonight...

Penguinrocks · Post by **Penguinrocks** » Wed May 18, 2005 11:10 am

Hi!
I took .75 last night and twitched and tossed and turned and flip and flopped....
lucky if i made 4 hours sleep and now i have a boring fiscal year end meeting at 9!
I'll be asleep by 9:01!

Loves ya
Penguin

RestlessNGa · Post by **RestlessNGa** » Wed May 18, 2005 3:03 pm

I took the minimum dosage last night and I could tell a difference. It didn't stop it completely. But at least I wasn't jerkin all over the bed like acrobats at a circus!

I didn't sleep much though, I have taken Ambien for years for a sleeping disorder. This new neuro wants me to stop...so I, like you didn't sleep much...

Heck, I always thought that's what meetings were for!! :lol:

Love N Hugs
Patricia

jumpyowl · Post by **jumpyowl** » Fri May 20, 2005 2:07 pm

Hello Patricia:

Thanks for writing me an e-mail. Something had to get me off my butt.

Seriously, glancing through these most recent posts, I missed a lot. All these medications resemble those my family have been forced to endure.

Let me summarize my e-mail to Patricia, then will answer in detail after studying these very interesting posts.

But first I will write to Becat. Long overdue!!!! :oops:

QUOTE:

Hello, Patricia:

I am glad you wrote as I have been neglecting my post as Jumpy Owl (I am also active on another web site - www.dryeyezone.com where I have much more knowledge accummulated over thirty years.)

As you may have known we did a survey (see attachment) and doing another survey (see 2nd attachment).

I am sending you the first, even though you need a powerpoint to view it. For me RLS also come with pain and about at least 50% of the others. Is yours primary or secondary?

I tried Tramadol but my present doctor, the first neurologist, is against it. She thinks that often the pain is from a separate source and has to be treated separately. Also, the pain of RLS goes away with motion and also if RLS is treated then RLS pain should also go away.

With this in mind I notice that you are not getting any of the basic treatments that is one of the dopamine agonists. (Oops, I saw it from the BB that you are on Requip. - Very similar to Mirapex).

I tried several other ways but finally ended up on Mirapex 3x 0.25 mg. I was also on three various antidepressants: Remeron (bad for RLS), Wellbutrin XL and regular Wellbutrin (another dopamine agonist). None of the antidepressants helped they actually contributed to the discomfort.

Occasionally I take Hydrocodon 325/10 mg once a day. Muscle relaxants are good for too much cramping but a bit too powerful for me.

I hope you do not mind if I post some of this!

Hope to be back at least part time. I must contribute to Jan's friend, lovely thread!

Had a lot of experience first and second hand with tranquilizers. The jury is still out!

Love to you all!

BTW Patricia, what is your sleep disorder? Did you have a sleep test?

RestlessNGa · Post by **RestlessNGa** » Fri May 20, 2005 5:14 pm

Jumpyowl, Yes I complete the sleep study. It showed restless body movement, not just in the legs. I also have mild sleep apnea, which is below a 5.

My neuro agrees that some meds can cause it to be a lot worse. Which is one reason he wants me to stop all meds. I go back to him on 6/17.

I also have a bulging disc in my neck, which he seems to think is the problem with the arms...I am not so sure about that. They tend to move on their own at times and I have been hit in the face a couple of times.

Imagine, a grown woman slapping herself!! LOL

Thanks for answering.

jumpyowl · Post by **jumpyowl** » Tue May 24, 2005 2:54 am

Several months ago when I also had a sleep test we had quite a discussion going on this DB. I had the impression that the primary reason doctors order a sleep test because they want to conform or rule out apnea.

However, the sleep test is good for many things. It is an excellent method to determine the presence and the severity of PLMD (periodic leg movement disorder) which you also apparently have. So did I at a severe level, something like 186 times per night. Anything higher than 20 times per hour is severe if I remember correctly.

Often (around 80+%) RLS patient have PLMD. On the other hand, not every PLMD patient has RLS.

I am certain that such a severe PLMD interfere with the deep sleep phases (stage 3 and 4). This then leads exhaustion.

Restless Legs Syndrome (RLS) Discussion Board

Hello Board Buddies--I'm just jumping right in here..

Hello Board Buddies--I'm just jumping right in here..

Requip

My private answer partially published

Restless....