No worries if you’re not up to spending long on the computer searching the site, as @Isaiah_40_31 says let us know then & we’ll try to help…
@Snapple2020 has been a really good source of info & advice on all things insurance if that’s an issue for you (I’m UK so can’t help at all with that!), here’s a link to one discussion recently about seeing Dr Hepworth out of insurance, there might be some helpful info or you could message one of the members directly to ask:
At what point do you stop trying with a specific doctor? - General - Living with Eagle
I don’t know if the info about advocating for yourself might be useful if you’ve not read that:
Making a First Appointment - Patient Self Advocacy / How to Self-advocate and Be Heard - Living with Eagle
I know that some members have been able to appeal to their insurance on the grounds that there are no specialists in their state dealing with ES…maybe one of the other US members can chip in with info for you…
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