Update: I would like to update after... - Restless Legs Syn...

Restless Legs Syndrome

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Update

Averys-meema profile image
6 Replies

I would like to update after seeing neurologist and having ferritin level checked. It was low. 38. Will be starting iron supplements. Crossing my fingers as I am writing this at 4:47 am. Very tired. If I don’t fall asleep very quickly, I’m doomed. Will be going to sleep specialist and neurologist who specializes in movement disorders as well as recommended by neurologist. Can’t come soon enough. Thank you for recommending RLS.org where I learned just testing iron levels wasn't sufficient which is what my primary did. Must test ferritin level. Wish drs were more knowledgeable about RLS. Going to try to sleep again. Good night.

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Averys-meema profile image
Averys-meema
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LotteM profile image
LotteM

Thanks for the update. I hope you one of the lucky ones for which raising iron really helps. Medicines are and should be - in my opinion - always be a last resort.

Bks429 profile image
Bks429

There is hope, believe me! I had a ferritin level of 29. I’ve been on iron supplements for about 3 months now and I have had only one night of rls!!!!! I am still taking pramipexole, which was prescribed years ago, and am going to try and wean myself off of it to see what happens. Good luck with the iron - it was a miracle for me.

Averys-meema profile image
Averys-meema in reply to Bks429

Thanks. Glad it worked for you. I’m still taking pramipexole too and lyrica for both arthritis and RLS. I’m hoping dr will recommend weaning off pramipexole.

YodaDog profile image
YodaDog in reply to Bks429

Make sure you read up a lot on DA withdrawal. Good luck with it.

Thanks for the update and glad to hear you're making progress.

You may not get an immediate effect from the iron, it could be a few months so don't be too disappointed as yet.

DicCarlson profile image
DicCarlson

My Ferritin was 10 points higher than you with raging RLS. Iron supplements (Ferrous Bisglycinate Chelate) cut into it immediately. Ferritin went to 105 within 3 months.

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