Your welcome Lulu - I think it's a hidden gem and its probably because specialists are downplaying the adneo as not been a problem. I've just about googled everything under the planet in the past 5 years and surprised I never found this either until recently
I'm glad you are researching everything, we need to unfortunately. Its so sad to hear they say its chromosomal without even testing & just keep saying, good luck, try again.
I'm 10 weeks today. Counting down until 13 weeks where I think I will relax a bit more. I've just come off 2mg dexamethsone and onto 30mg Prednisolone this week, so a little bit nervous, hoping I don't have any flares - not even sure if that's a possibility and I'm still on Neupogen until 12 weeks and had IVIg 2 weeks ago - so really, there's probably not a alot more I can do, but try and relax.. yeah right !