PLMD/PLMA - anybody have experience with this ?

Hi, I’m 72, I’ve had RLS all my life. It’s severe now. I take pregabalin and low dose buprenorphine, it works quite well. A few months ago I developed what I call “earthquake legs” while awake, they’re involuntary. It almost always happens just when I start to move after relaxing or sleeping. It was so sudden and weird I began looking for answers. I have now had 2 neurologist appointments. Nobody thinks this originates from my brain, which is fantastic news. Now my dr wants to keep testing, thinking that nerves are pinched in my lumbar region. If the MRI is negative then I get a EMG. This weekend I thought long and hard about this. I think it’s PLMA which is PLMD during wakefulness.

Meanwhile my RLS dr who is out of state suggested an iron infusion to bring up my ferritin levels. I just finished those infusions last week. I’m told it can take weeks to notice any changes. If it helps my RLS or PLMA or both - that would be so great. My RLS dr called my new movements “jerky legs.” I found that discouraging because it felt dismissive. He’s acting like he’s sick of me too, we correspond in the patient portal. In January I had a hip replacement and my RLS went wild, it was worse than the pain! So I wrote to him a lot begging for help. He refused to increase the buprenorphine which I thought was just wrong. Then a few months later this new thing started. He finally agreed to a slight increase. It helps with the PLMA but I really don’t like feeling drugged during the day. Plus I’m not panicking about it anymore cuz it hasn’t increased and the neurologist saying it isn’t in my brain.

So now, instead of continuing with more and more testing I’m considering just calling it PLMA and to stop worrying about it. Anybody here have any similar experiences??? Thanks.