Restless Legs Syndrome (RLS) Discussion Board

This is a unfortunate situation, especially in the USA. Sometimes insurance will pay for IV Iron for RLS patients, but mostly they won't. From their point of view, IV Iron is only covered for the FDA approved indications listed on the product's package insert, which none of the current IV Iron prepa...

Holland, I'm not quite understanding you about higher Ferritin levels being due to something else. What else? I've read about a number of people with RLS who have, with oral iron, raised ferritin to close to 100, as I have. How soon after you augmented on pramipexole did you start a reduced dose of...

Please do be careful of your ropinerole dose. The max is considered to be 1 mg daily. You recently went from 1mg to 1.25mg and are now at 1.5mg you are at 50% over max - and still suffering RLS symptoms. I think you need to reconsider whether you should be taking ropinerole. Bearing in mind that yo...

I was able to to increase my ferritin level from 19 baseline to about 100 using OTC iron tablets, where it has stayed for over two years. It has significantly reduced my RLS. I take pramipexole 0.125 mg as needed and have not augmented despite about a decade on this med. Part of this is no doubt du...

MCH is Mean Corpuscular Hemoglobin. It is the amount of hemoglobin in the average cell. Doesn't mean much unless there are significant abnormalities in the other cell indexes. It can be normal with significant blood problems because it is an average. Most significant blood problems are associated wi...

What about slightly a low or average MCV and low MCH? Would that indicate anything? Probably means nothing. Possibly early iron deficiency anemia. These numbers are generated automatically in modern cell counting machines when the doctor orders a CBC ("Complete Blood Count"). For the most part the ...

I haven't taken the vaccine, but I did have Covid-19. Really sick for a week, but didn't cause any RLS symptoms to worsen.

High MCV is commonly associated with Vit B12 deficiency and less commonly with other blood problems.The low MCHC goes along with the high MCV. MCV is Mean Corpuscular Volume. This is doctor-speak for large red blood cells. MCHC is Mean Corpuscular Hemoglobin Concentration. If the red blood cells are...

Thanks Holland. I'm wondering if anyone here also has had experience or seen a link between MCV and MCHC levels? My MCV is high and my MCHC is low. Has anyone else seen this? On another note: My neurologist got back to me and said she does not have experience with iron infusion protocols but would ...

Sorry, it looks like stjohn's ferritin levels were 250. stjohn, I am curious if I'm reading that correctly since it looks like the guidelines say your levels need to be lower than 100? You are correct. For the INITIAL IV iron infusion the guidelines require a ferritin below 100. If a person has a g...

Thank you, Holland, I was wondering if most insurances cover this type of infusion? I checked the Injectefer site and unless my insurance covers most of the cost then I really can't afford it Ken, insurance coverage is difficult for IV Iron for RLS. I got mine covered, but most people end up having...

Hello I am trying to explore iron IV infusion but I cannot get any doctor to listen to me. I live in Seattle WA and wonder if anyone here knows of a doctor who does iron infusions. These were my blood results 4 months ago: Iron Bind.Cap.(TIBC) 271 ug/dL UIBC 179 ug/dL Iron, Serum 92 ug/dL Iron Satu...

Hi Ken, The good news is that you qualify for IV Iron infusions per the International Restless Legs Syndrome Study Group guidelines. Now all you have to do is persuade a doc to give you the IV Iron. Injectafer is the preferred iron brand. The lab reports "normal" values based on a healthy population...

Hi Fishfood, welcome to the forum. Your symptoms are not really typical of RLS. Most RLS patients do not have any pain. The primary symptoms of RLS are urge-to-move legs, especially in the evening, with near immediate relief with getting up and walking around. Additionally it is very rare for Requip...

Welcome, I'm glad you found us, but sorry you are having problems. My first thought is that you may be augmenting. This is a situation in which RLS symptoms become more severe in spite of increasing doses of medication. Can you tell us what dose of Mirapex you were taking before switching to ropinir...