Mirapex, does it work?

jml945 · Post by **jml945** » Tue Jan 27, 2009 7:43 pm

Was it you who said you have RLS and MS? Can RLS be an MS symptom? For many years I feared that I had MS even though all the tests came back normal.

Metabolic wreck · Post by **Metabolic wreck** » Tue Jan 27, 2009 8:03 pm

yeah, that's me--the metabolic wreck. (although the name came about because of Grave's disease and a heart attack, before I knew about the MS).

My neurologist and I both think that there could be some link between the RLS and the MS, but I don't guess there is any way to prove it.

There are a lot of other things that can act like MS, or I guess MS can act like a lot of things. It all depends on which nerves are affected, or where the lesions are in the brain. Basically, anything can be an MS symptom.

I hope that's not what you have,
the Wreck

Post by **ViewsAskew** » Tue Jan 27, 2009 8:08 pm

Wreck - Dr B - actually Dr Mark J Buchfurer, located in So Cal, on the RLS Foundation's medical advisory board, and co-author of two books about RLS - is not the father of RLS. He's a researcher and sleep doc who takes us very seriously. So seriously, that you can write him a letter and he'll answer you. The site is rlshelp.org. You can see about 80 pages of patients letters over the last decade. Great, informative reading.

Officially, I think Mirapex takes 90 minutes. Requip 60 minutes. BUT - if you are "behind", meaning your symptoms have already started, then you will have more difficulty getting them under control. With dopamine agonists it's best to take them before you have symptoms. That's hard when you have all day symptoms, but it's not impossible.

jml945 · Post by **jml945** » Tue Jan 27, 2009 8:08 pm

No I don't think I have MS. I guess I really don't know what's really wrong with me, but I do know two things for sure, that I have anxiety and RLS. Those two alone have been pretty terrible for me and my priority is to treat both as best I can.

Post by **ViewsAskew** » Tue Jan 27, 2009 8:11 pm

Since anxiety problems are something like 12 times more likely for those with RLS, it's not surprising that you have both RLS and anxiety.

I wish Becat were here today. Her SIL has MS and RLS and it would be nice to hear her knowledge about the two.

jml945 · Post by **jml945** » Tue Jan 27, 2009 8:15 pm

My sister says that she too has RLS (she is notorious for moving her legs all the time, even more so than I am) and since it's hereditary I have no doubt that is what I have. My doctor also confirmed the incidence of anxiety in RLS patients so for now I am going to accept both DX and I hope that is all that ever shows up. As the great 80's cartoon GI Joe always proclaimed, "now I know, and knowing is half the battle". I agree witht that statement, I am so glad I know what is wrong with me.

Post by **ViewsAskew** » Tue Jan 27, 2009 11:14 pm

jml - that seems a good attitude to me. You can let go of the worries of "but what if????" and just live your life, dealing with what you know.

Maria · Post by **Maria** » Wed Jan 28, 2009 5:50 am

jml – As you’ve noticed from everyone’s experience, nothing seems to work forever -- or what once worked may be combined later with something else.

I took only xanax for rls for quite a while and did very well. Later mirapex, too, was fine except for the insomnia which accompanied it – and finally the augmentation. You have to play around with timing to get it right for you, and then be faithful about taking it when you know you should – before your symptoms start.

So I’m off on a new adventure with methadone – and now it really seems like an adventure since it involves hijacking!

I agree with you -- we lucky to have landed in the midst of this positive thinking and supportive corner of the discussion world. You all are the best.

jml945 · Post by **jml945** » Wed Jan 28, 2009 4:44 pm

I have learned that it's so much more productive to be positive and avoid the "what if's?". I spent many years in that frame of mind and it only led to sheer misery. Now I just roll with the punches and I find myself to be a far happier person because of it, I think my wife and those close to me would agree.

Maria, interesting you said that mirapex caused insomnia for you, I have had the opposite happen. Yesterday I took it about 5pm (which is earlier than I normally take it) and it just knocked me out by 7pm. I literally could not stay awake... but of course that could have been because I was already tired from getting back from a business trip.

Post by **ViewsAskew** » Wed Jan 28, 2009 8:33 pm

JML - when I first started Mirapex, I had about 90 minutes before I literally could NOT keep my eyes open. If I was out, I had to make sure someone else was driving and that I was home in 90 minutes after I took it. I also learned that I could not drink more than 1 glass of wine in an entire evening or I became very ill.

jml945 · Post by **jml945** » Wed Jan 28, 2009 8:53 pm

I can completely relate. This med makes me so sleepy... I just hope the sleepiness is one of the side effects that wears off eventually. Not that I'm complaining, I could use the rest!

Nicky · Post by **Nicky** » Fri Jan 30, 2009 10:07 am

I decided not to switch to Mirapex, but instead I asked to split my Requip into two 1mg doses. I chose this over my neuro & he agreed with me. Like jml this RLS runs in my family, I had a sibling (brother) who had terrible sleep issues, as does my mother (she's on Requip). My older sister shows no sign of it, she has never had dairy, tea or coffee. Go figure!
Nicky