New to the site...not to RLS

[Gavin84]

Hey all, so I was diagnosed with perioidic limb movement disorder in 2019. I was placed on Mirapex 0.25mg and things seemed ok for about a year until augmentation kicked in. It took me a while to figure out why I was suddenly getting day time symptoms, as I was only used to kicking in my sleep. During this process I was getting worked up as to why in Gods name I have PLMD (Vitamin levels, Iron, etc etc).....as it turns out they have no reason as to why I have PLMD. I had a nerve conduction test performed in 2021 that indicates I have reduced nerve conduction in my legs and thus neuropathy. I'm a otherwise healthy 37 year old and I've seen 2 neurologists so far. I'm still fighting to see what else might be causing my neuropathy because I have no clue why this is happening. My A1C is 5.8, iron (ferritin) levels are normal, my B12 was slightly on the low side so I have been taking B12 vitamins daily. I'm really not sure where else to investigate.

Unfortunately I'm sleeping terrible on my current medication regimen of 900mg Gabapentin 3x/day and Carbidopa/L-Dopa 25/100 (1-2 pills at night), I also take Melatonin 10mg. Its almost like my brain doesn't want to turn off at night and I'm just wide awake all night along with the kicking/jerking it just leads to a rough next day.

Any workup suggestions and/or medication suggestions?

[Rustsmith]

First off, the probably reason why you have PLMS is that you chose the wrong parents, aka genetics.

Next, you should probably start looking for a neurologist that understands how to treat RLS and/or PLMS. Carbidopa/Levodopa should NOT be a daily medication when treating anything except Parkinson's Disease. When taken daily, it very quickly causes augmentation.

As for your ferritin, do you know the number? "Normal" for those who do not have RLS/PLMD is anything between 20 and 400. For those of us with these conditions, a level of 75 is the minimum and better yet, you should be over 100.

As for Melatonin, 10mg is a strong dose when taken by one of us. It can help in small doses (say 1mg), but ironically, it can cause insomnia when higher doses are taken. Once again, the high doses are fine for others, but not us.

So, here are my suggestions, not in any particular order:
1. Find a new doctor, one who understands how to treat either RLS or PLMS. Or, find one who is willing to learn from you (we can point you to the documentation that you need to educate a GP or neurologist that is willing to learn something from a patient (which is a very rare commodity).
2. Drop back on the melatonin dose.
3. Find out what your ferritin level is and if it is below 75, start taking an iron supplement on an empty stomach (and with vitamin C if you take iron sulfate).
4. If your iron is okay and cutting back on melatonin doesn't help and your PLMS is still a daytime problem, you may have augmented into a case of RLS. Since you have augmented and if your iron levels are good, that would mean that you could be facing the need to take an opioid to regain control of your quality of life. So when you call around to other neurologists to find one who can help with your PLMS and current situation, ask to speak with a nurse and then ask if the doctor will willing to prescribe opioids for chronic neurological conditions like severe RLS. The answers should be rather telling of whether that would be a suitable physician for you.