Sorry, long post but at my wits end!, Have had symptoms since June, 24/7, never comfy when sitting/lying and the tingling, pulling in legs drives me nuts. I have particular problems with tightness/pulling in thighs when I first wake up and for about an hour after I get up, which I don't think is typical of rls though? I paid to see a neuro in July who wasn't sure it was rls and suggested mri and nerve conduction studies, but a bit pricey so I waited for my nhs appt in September.
First gp wanted me to take ropinirole and said my ferritin was normal (52), second one acknowledged it needed to be higher so advised iron tablets, but also suggested ropinirole, said he couldn't prescribe gabapentin. Nhs consultant wasn't a good experience, very short appointment, fired lots of questions at me rather then letting me tell him how it was, although he did ask gp to prescribe gaba (to take "as needed") rather than rop because of possible augmentation/icd, and did send me for mri. I asked him about the ferritin and he said he wasn't a haematologist and I should talk to my gp! In the meantime ferritin up to 53 after 2 months iron tabs. Now on liquid iron, gp said no IV iron for rls on nhs. Mri showed degenerative disc disease (am 56 with some osteoarthritis) and consultant said "it could well be the cause of her symtoms" and discharged me. So now I'm not sure what to do. I am hoping getting my fertitin up will help, but haven't started the gaba yet, waiting for Christmas hols when I don't have to drive to work in case of side effects. Am also having acupuncture which has helped me cope better but not alleviated symptoms much.
I suppose I'm asking whether it is worth paying for another consultant who actually understands rls so I can get a firmer diagnosis and more help with dosage? I did find a Parkinson's specialist in Derby (i'm in Nottingham) who seemed sympathetic when I emailed. Or just take the gaba and hope for the best?