Restless Legs - Updated Algorithm vs. AASM Guidelines for Iron
I have had restless legs for over 15 years and was originally treated with a dopamine agonist. It worked great until I experienced augmentation. Since then, it has been the worst experience in my life. I have already tried a slew of medications, have impeccable lifestyle habits, and would like to avoid opioids and methadone.
After reading the Mayo Clinic's updated algorithm, it became clear that 1) nobody had ever adequately assessed my iron levels (only ran CBC, but no ferritin, iron, or TIBC) and 2) After finally getting the right panels done, I meet the criteria for an iron infusion based on the Mayo Clinic's guidelines: https://www.rls.org/file/general-free-publications/MayoClinicProceedings.pdf
However, at the sleep center where I was evaluated, I was told that my iron is fine. I sent in a copy of the algorithm and was told that it would be discussed with the medical director, but that they go by the AASM guidelines, which appear to be outdated with regard to iron infusion criteria when compared to the algorithm the Mayo Clinic put together. Upon my request, the medical provider referred me to hematology while he consults with the director of the sleep center, but the referral was sent in without any type of priority scheduling. That means that I am supposed to manage without iron until the next available appointment four months from now. In the meantime, I am now on day 2 without any sleep directly related to the RLS.
How do we get doctors to understand how serious this is? It seems like an iron infusion would be so much better than being placed on another medication that either leaves me severely cognitively impaired or nauseas and vomiting (I've tried everything possible). The Mayo Clinic is a reputable organization, yet it seems like the sleep doctors are not interested in learning about this. Has anyone else experienced this? I want to scream and cry because I am so completely exhausted and disgusted with the situation, but I realize that would not be productive and would be misinterpreted. Has anyone experienced something similar? What have you done to resolve the situation effectively? Have any of you gone to the emergency room for lack of sleep? If so, what was your experience?