ropinerole: just weened off of... - Restless Legs Syn...

Restless Legs Syndrome

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ropinerole

goodie profile image
5 Replies

just weened off of gabapentin 300mg capsules plus 1pramipexole 180 microgram and 1 5mg clonazepam they were ok at the begining but after a couple of months my legs and feet started swelling up what with rls and the pain from the swelling the dr changed me on to ropinerole I for 2 days then 2 each night and water tablets combined BP 1 in the morning since i have changed legs gone down had hardly any sleep just wondered how many other people take ropinerole

I went for a blood test 2 months ago my ferritin was (23) I said should that be higher to the DR she said no thats normal but I feel sure I have at some read it should be higher

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goodie
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5 Replies
Kaarina profile image
KaarinaAdministrator

Hi goodie

You are correct, ferritin levels for RLS sufferers should be in between 70 - 100. In that case your ferritin levels are low.

If you type in Ferritin Levels RLSUK in the search box at the top of this page you will see numerous postings about this.

I am sure others will reply to your message soon.

Kaarina

gypsy49 profile image
gypsy49 in reply toKaarina

I had an argument with my neuro dr UK about my ferritin level telling him it's to low for RLS (24 now was 4 ) told him should be between 70 and 100 he wouldn't have it gggrrrrrr said its not good to have it high as it is low he wouldn't listen to me at all even when i took him loads of print outs for him to read he didn't want any of it wasn't interested in reading cos it was all American research my argument was that they do more research than the UK

goodie profile image
goodie in reply togypsy49

hi gypsy49 thanks for your answer I live in Southend Essex uk and I have just sorted out 2 letters from our local hospital were I saw 2 different nerologists at different times this was in 2012 both said my ferritin was to low 23, but what makes me mad I don't think some of these doctors know what its like when you are at your wits end dead tired and got to walk about alnight my DR just says what do you want to do try another tablet.I am going to take the letters on Monday to show her,I have asked her before but she said there not on the computor. i will let you know what she says

gypsy49 profile image
gypsy49 in reply togoodie

Hi Goodie

thing is most neuro's don't know what they're talking about mine treats folk with parkinson's with an interest in RLS im sure they don't listen to anything you say and then of course when you leave you realise you forgot to mention something gggrrr keep telling mine that my ferritin level to low but he won't have it i have RLS 24.7 so no rest during the day either :( getting peed off with him now i did take a sleep diary in with me and told him to read it whether he will or not i don't know included a few choice words in it too and about him lol he's upp'ed all my meds to double what i was on making me feel yuk and leaving me feel like i got a head full of cottonwool all day . he didn't even mention the MRI i went for few months ago i felt rushed .... and so forgot to ask .

hope you get somewhere with yours when you go lol yeah please do id be interested in know what they say x

goodie profile image
goodie in reply togypsy49

phoned tuesday the doctor I usually see on a weeks break saw another DR did not know alot about Rls but he had been looking at my notes on the PC he picked up on the letters that were from the nerologist and checked the tabs I am taking gave me prescripion for enough tabs over christmas also iron tabs and a form for a blood test in a months time. i'd had such a terrible week felt nackered, just goes to show how some doctors are different to others. Cant you see another doctor at your practice. what area do you live? hope get sorted soon let me know.x

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