Restless Legs Syndrome (RLS) Discussion Board

fuz_mind ...... fighting one battle at a time Sometimes I feel like a Ninja with super martial art powers - constantly fighting off 'whatever' with arms and legs flying.... boom - wham - gotcha !! Well, on reflection, perhaps I'm more of a virtual/emotional Ninja .... I tried to visualize my arms a...

I'm hoping to get my first transfusion this year. Have an appointment schedule (on the books) with William Ondo in September. It would be interesting to see if people were semi cured with the transfusions coupled with a good diet. With that said, I realize there are some here where diet does not im...

ViewsAskew wrote:So many tough decisions, fuz_mind. I am sure other people are in similar shoes, but when I read all the stories here of what we go through, I feel so sad and angry that we have to do all this.

i totaly agree viewskew....we just have to fight one battle at a time.....

badnights:

i was very surprised too

hi all i have stayed off the board for a while because i haven't been doing too well on the 1.25mg ropinirole and just needing some time to stew on options --> just to maintain my sanity i have increased my clonzapam and tramadol to get through the night neuro reluctantly agreed to let me stay on 1....

an update following everyone's response my neuro consult didn't go too well yesterday, even when I brought the book into the appointment. maybe i should buy a copy of the book as an early Christmas gift my ferritin levels have dropped further and he was still cheerfully saying that the numbers are g...

When I contacted Dr. Buchfuhrer last year, he volunteered to let me have the protocol he uses for infusions if I was going for one. My iron levels rose with oral iron so I never asked him for it but it might be worth getting in touch with him. does anyone have Dr Buchfuhrer's protocol for infusions?

thanks viewsaskew!

this is a very late response.... but my neurologist is of the opinion that clonazepam helps with both sleep and pain, whereas he is less comfortable putting me on a sleeping tablet, like zopiclone, which helps with sleep but not pain i was on it for a year plus and still on it; I know I have definit...

Hi all! thanks for all the responses. i'm on 5th day of 1.25mg and honestly I can see my symptoms gradually worsening over the last 5 days; by yesterday i was having problems with sitting still in the afternoon and have gone back on my tramadol because the pain was unbearable; last night i was wakin...

Rustsmith: my copy just arrived from amazon today!

i saw the recommendation for the book in another thread and i'm reading it now with my post-it stickers beside me

viewsakew : do you have the reference from dr buchfuhrer re: DAs cold turkey?

hi badnights thanks for the information! i do think i was augmenting which was why the dose went up from 1.25 to 1.5 to get some relief (this was before i found this forum and realise that we should try to keep to 1mg), hence me trying to reduce the dose i have some tramadol and clonzapam that has b...

thanks for sharing viewsaskew & badnights! it took forever for the neurologist to be convinced that i needed iv iron because it's not a typical procedure done in my country..... he had to check if the hosptial even offered the treatment..... viewsakew: hope the iv iron works and last longer for ...

Hi all just wondering what are the experiences like with tapering off ropinirole and the pace at which people have gone off ropinirole? i am on 1.5 mg of ropinirole (increased from 0.25mg to within 1 year of diagnosis), and was at the most comfortable that I have ever been in the last 3 years. But t...