Restless Legs Syndrome (RLS) Discussion Board

Hi there, glad you found us and sorry you are having troubles. It is not clear to me that you have RLS, it is diagnosed based on symptoms and leg jumping WHILE AWAKE. Leg jumping while asleep is frequently due to PLMS. Initial treatment is frequently similar, so at this point it may not make much di...

I got some new IRON TESTING results, and I think they warrant consideration for iron infusion treatment. I'd be grateful for some feedback. EDITED just now, though: I realize these numbers may not be relevant. I was not fasting for the blood test. :roll: Ferritin was 112 three years ago, but now it...

I will be sure to ask my doctor to test for transferrin saturation too! Nightcat: Different labs have different protocols for iron panels. The end results you need (per the guidelines) are ferritin and %Transferrin saturation (TSAT%). Your doctor probably isn't aware that just ordering a "transferr...

When I looked at Amazon, they had the book by Lee, Dr. B, Allen and Hening for $28. The catch is that they only show Dr Lee as the author. It has a blue cover. ... Here is the URL for the book on Amazon: https://www.amazon.com/Clinical-Management-Restless-Legs-Syndrome/dp/193261088X/ref=sr_1_5?dchi...

Nightcat, Steve sounds exactly correct to me. Here is some more iron info. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron...

Bill, There is no problem with overlapping pregabalin and pramipexole, they are commonly used together. Stopping the pramipexole at 0.375mg daily is probably ok, but Steve knows more about this than me. The main risk is DAWS (Dopamine Agonist Withdrawal Syndrome), but I think you are ok at 0.375mg. ...

Keep your appt w Dr B. He is known to prescribe IV Iron for some patients that have ferritin levels above the guideline cutoffs. Of course, he will also confirm (or refute) the RLS diagnosis.

Many lupus patients have very high ferritin test (but normal actual iron levels in their blood).

Two points to add to what Betty wrote: First, RLS is due to Brain Iron Deficiency and you should attempt to get iron treatment. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only tre...

While it is true that the ferritin test is most accurate when done fasting, the difference is minor except in the case of a low ferritin (<20). The iron in the cereal will not change the ferritin test. You need a lot more iron to affect the test. Remember that ferritin is not iron. It is a protien t...

Finally talked to a hematologist about my sky high ferritin .... guess what reading the lab omitted from the blood work requisition.... Ferritin lol Anyways... I'm going to have a different genetic/ hemachromatosis test I voiced my concern about treating iron overload In the unlikely hood it would ...

I am currently taking Ropinirole - 3.5mg per day. The maximum RLS dose is 4 mg per day. I have been taking Ropinirole for over 15 years ... so I am worried about augmentation as well as the fact that I am approaching the daily limit for RLS treatment. Tom, the dose you are taking, while ok as far a...

So are you saying that we should just go by symptoms and not by ferritin level? Since it's my rheumatologist who is ordering them-,,, If you have a doctor that will order IV Injectafer for you, I would do whatever the doctor feels comfortable with. I certainly would not criticize any doctor that fo...

... While I've got you: my doc didn't think it necessary to test my blood after my infusions to see where the ferritin level went. Think I should ask for that or it doesn't really matter? Thanks! The guidelines suggest a test before each infusion and a test at 8 and 16 weeks post infusion. However,...

Hello everyone, Background: had Injectafer infusions in late Sept/early October and had hoped they would last a year--but then I've seen posts on FB where some just get infusions every 6 months. Wondering if it is common or not to have a constant feeling of coldness as a sign that it's time for mor...