Originally Posted by Richard Blum
I was diagnosed with heretitary hemochromatosis 15 years ago. It is the inability to metabolize iron. Iron had been building up and storing in my body since birth. It was poisoning my organs. Treatment was therapeutic phlebotomies to reduce the iron stores. I gave over 100 pts of blood during the de-ironing process.
Late in the deironing I developed restless legs which got more severe as my iron levels dropped. Now 15 years later RLS is in full swing. Mornings are usually ok but if I try to relax anytime after noon it's impossible. It. really affecting my life BIG TIME.
I've been on clonipin, then requip and now mirapex which has been the best so far, but I find I have to up the dosage and take itearlier in the day.
I would like to hear from anyone having a similar set of problems
Richard, I have hemochromatosis as well, diagnosed 30 years ago (my brother and I are the only ones in the family with it). I used to get RLS on and off, but in the past week it has been relentless, unable to sleep two nights in a row. When I was first diagnosed (30 yrs ago) I was getting phlebotomies approx 2-3 times per week and at that time they also gave me a shot of vitamin B-12 after every phelbotomy. A few months ago my iron levels were sky high again, and now getting phelbotomies once a week for 3 months in a row so far....this new hemotologist has not discussed or given my B-12 shots. I did ask him about it because I am so tired and achy.....yesterday I received a call from his office stating dr. wants me to have shots of B-12. I am hoping the shots will help with my RLS.......if not, I don't know what to do, it's killing me.