So tomorrow i get my iron infusion. Really hoping it helps. Then tomorrow night i take my last dose of pramipexole. My back is acting up tonight, which is interfering with my ability to take a million baths. Its always something.
Does anyone know why rls patients have low ferritin?
I had an iron infusion and was told it would take up to 6 weeks to work. Not sure why you’re taking your last pill now.
It would appear that our iron storage capacity or the protein that stores iron in the brain is out-of-whack.
We can, mostly, raise it to levels that help with the disease (or about 80% of us), but then slowly, over time, it just drifts away.
In one of the webinars on rls.org, they admitted that they were puzzled about where it went - they could not find it. This is the top doctors losing stuff, and admitting it, so it's a real puzzle.
As Marsha asked, why are you stopping the pramipexole without help? Such as an opioid? The iron levels in the serum will rise very fast, but that does not mean it is in the brain. It takes a very circuitous route via the bone marrow, liver, body organs, then finally the brain, just 0.1% of it.
Again, as Marsha says, you will have to wait six weeks or six months for the full effects to manifest in the brain. So do not despair if you do not get a result, even if your doc says your serum levels are lovely. He cannot measure your brain, except by spectacular means which he will not offer. (Including an autopsy, we don't want that).
I think we must all learn to be sceptical, and patient, and not expect quick fixes, but do expect regular reversals. Stoicism is what will keep us hanging on until we hit the sweet spot. It is hard, that is the fact of it. If we accept that, we do not have to add more weight to the load.
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