update

[Bks429]

So, here is the deal. Initially my neuro was not interested in my ferritin level. Advance 6 mths, he had a life changing experience (seriously), and last visit he was aghast at my 29 Ferritin. My insurance will not allow infusions unless all else fails so I am on Slow-fe. Within a few days I was feeling like my old self. I could sit and read or knit at night (previously the rls would start around 7 until I took my mirepex (.25) Some nights I’d be up all night walking, exercising, etc.). That lasted about a month and a half. I was in heaven. I had my life back. Slowly over last week or so, it’s creeping back. Two nights ago, I was on the hamster wheel. It sort of all started when I was feeling great, I tried to wean off the mirepex. I was breaking a small piece to try and reduce down to at least ¾ tablet. As the night symptoms resumes, I gave up and went back to full tablet. Any thought?

[Hidden]

Hi Bks,

I’m sorry but I don’t have anything useful to say really but I just wanted to say something.

I’m really sorry that things have got so bad again after you had some relief from your symptoms. That’s so bloody horrible.

I hope things get better for you again.

[Rachelp1]

Hi, I get this all the time, I find something that Improve things for a couple of months, but I know that it’s not going to last because that’s always been the way over the last few years. It’s very odd that there is no one thing that works for every one and nothing seems to work for very long. Wishing you all the best

[Hidden]

Unfortunately, this insidious disease becomes resistant to most medications and declares itself again after a period of time. I swear that it spends time trying to figure out a way to thwart the latest medication. After a few years, I had to increase my opiate medication to keep it in check.

If you will indulge the science fiction fan in me. When I am dealing with this disease, I often think of the shields on Star Trek and how they have to keep changing the "shield harmonics" to prevent incoming weapons from penetrating the shields as the weapons are smart and can eventually overcome a shield at a consistent level (harmonic). This disease seems to adapt to medications. I think I have found one that works and in a few months to a year, I am back where I was with symptoms.

I have just accepted that this is going to be guerilla warfare on this disease and it is going to always get around my defenses (medications) eventually and I will have to try something else.

IMHO (In my humble opinion). . .

Jerold in Citrus Park, FL USA

[fchrist in reply to Hidden]

I like that. Makes perfect sense to me!

[DicCarlson]

Low Ferritin levels can present as a Brain Iron Deficiency (BID) and this is a leading cause of RLS (but not in everyone). Low Ferritin is observed in pregnancy due to the growth demands of the fetus depleting iron in the mother and a corresponding observance of RLS during pregnancy. Try switching to Ferrous Bisglycinate Chelate as it is better tolerated and better absorbed form of iron.