a complete waste of time!!!!

[stan38angler]

on WEDNESDAY i

had a long awaited appointme nt with an neurologist (ha-ha)8 months ive waited right from the off he said he couldnt do anything to help me!!! the only thing of any use to me was he asked me had i my IRON CAPACITY checked?? upon getting home i googled it to find it was my ferritin level----i followed further info about iron levels (ferritin)and found an item saying that to much iron in the ferritin level can cause RLS --having read so much about the subject it prompted me to ask if anyone knows the right amount we need to help us control this thing we are cursed with.

[Hidden]

Too little iron causes RLS. Look up gentle iron in the search engine here.

The Dr pointing you towards iron is better than most people get!

[stan38angler in reply to Hidden]

hi RAFFS just to clear a point he didnt repete didnt point me towards iron if he had asked me about ferritin levels i would have known what he was on about i would then have told him the last time it was checked it was 97 but because he asked in a different way it threw me----but thanks for your reply.

[Hidden in reply to stan38angler]

I meant it insomuch as he got you thinking about it enough to post here and you then got the good advice from Pippins2!

Its a better result than most get!!

[Pippins2]

Stan the recommended ferritin iron level for RLS is over 70, some experts like it up to 100.This is much higher than that of someone who does not have RLS. So ask for your number, not just if it is normal or not x

[stan38angler in reply to Pippins2]

hi KIM I am not sure to what e/mail your reffering to i dont think

its the message i sent you i feel its about the post ive put on about what ive read on google its a heath line where it clearly states to high a ferritin level can cause RLS among other things

[LoisTonya in reply to stan38angler]

I'm wondering if I've overdosed on iron. I didn't take it whilst on holiday and I was a lot better. My symptoms returned after I was back on the supplements. I am experiencing bladder discomfort which triggers kicking legs. A urine test showed no infection. But now I've seen a GP who takes rls seriously. She ordered a blood test for Vit D, magnesium and iron without being prompted. Apparently, too much iron can cause cystitis!

[DicCarlson]

You need to monitor your iron (Ferritin) levels very often - say every two months - especially men and post menopausal women. Normal for men is 18-270 for men and 18-160 for women, Mine started out at 49 - went to 105 with daily supplementation with 18mg (ferrous bis glycinate chelate) after 3 months. I then went to every other day, then twice a week, now nothing. It was the key for me - I have no RLS now (severe with Fe at 49). Still battling insomnia. From the experts at Johns Hopkins "The single most consistent finding and the strongest environmental risk factor associated with RLS is iron insufficiency." hopkinsmedicine.org/neurolo...

[Hidden]

I was recently given the exact opposite advice while having a brief stay in hospital. The doctor (who I might add was not a specialist in the field ... he was actually just an everyday GP, and an ill-informed one at tha), requested that I have a blood test to check my iron levels.

When the result was in he informed me that my levels were a tad low, however not low enough to cause any serious concern, so ordered me some iron tablets assuring me that this remedy would 'cure' me of my RLS symptoms.

I personally find it to be rather insulting, especially after reading posts like yours ... when you were given the opposite advice.

Who on earth are we supposed to believe?

[Windwalker]

I am a long time sufferer with RLS. Doctors are taught nothing about this condition in Medical School and are not very interested in it because the medical books are not helping them. As long as we keep buying the meds that big Pharma sells that were developed over 50 years ago for Parkinson's disease, there won't be any research to find a treatment that helps most of us. A disease that affects 10% of the world population is being treated as an ''orphan disease'', that is a disease that affects so few people that the payoff for research and the sale on meds developed for that disease won't ever be profitable. This is unwise financially and humanely. 10% of the world isn't orphan and contrary to the medical profession we do suffer greatly.

Many drug addicts and many alcoholics are self medicating just to survive with some level of comfort. Many suicides are caused by victims not getting relief from the symptoms of RLS. I am proposing a theory that I have not read anywhere, but have experienced myself over the 45 years I've had it and watching my mom and her 9 sisters suffer. One of those sisters either accidentally or on purpose overdosed on opiates that were prescribed for her and died of that overdose. At her funeral one of her sisters said, ''well she is free from the curse'', in a tone that seemed envious.

[Hidden in reply to Windwalker]

Sorry to hear about your sister, I can fully understand how people would check out of the misery of life with RLS. Unfortunately since there is little to no money or glamour in it the medical Mafia have no interest in it. Our various Govts are more interested in keeping their cronies in Big Pharma rich so you can be sure as hell people like us are not considered.

The sad thing is that people continue to vote in imbeciles and crooked scum bags that maintain the corrupt system; come the revolution!

[RLSBOGEY]

I have read info on John Hopkins Center for RLS stating that iron supplements can help raise ferritin levels in the brain above 100 and alleviate RLS in some people. How much iron needed is open to debate ranging from 85 mg once a day to 325 mg twice a day to a larger single dose every other day. I also read that iron has to be taken 1 hr before eating on an empty stomach or 2 hrs after eating along with vitamin C for best absorbtion. It does not appear that there is a concensus on any remedy that works for all. If you find any good solution I would like to find it too. Wish you well.