You are welcome and it is so scary, but believe me its not when you get in touch with people who know such as Vasculitis UK etc, so many versions of Vasculitis, but not all and doom. Sorry I dont know about yours, mine is very rare and not many people in this country has/have it, so I am on a support group too that deals with mine.
Re the Rheumatologist, I have not seen one yet Ha!Ha! Due to see one in the next few weeks. You probably need to see someone who deals with Vasculitis too. I go to Addenbrookes Hospital, Cambridge, but there are others in London and other areas. Vasculitis UK recommend Dr David Jayne, Consultant a lot of people see him initially, but there are quite a couple of others in London. Vasculitis UK will help you, especially there helpline and FB Page and Health Unlocked. You can put all your questions, worries etc and you will get all the support you need. If they don't know someone is sure to know. There is also a nurse or there was on the helpline too, she has vasculitis too. They will help you through and I will if I can. Main thing is to get the right medications for your illness and some pain relief. As I say we are all different. I have Churg Strauss Syndrome EPGA, its rare, I belong to a specific closed group on FB and even us all have different reactions to drugs etc. But remember you are not alone. One thing I know pain and the terrible exhaustion seems to run through most of our illnessess and being afraid or stress makes it so much worse, can cause flares etc. I don't sleep either I am affraid. One thing I think the insomnia is caused through the steriods, but without them I would die. Sleep when you can, others who may know your illness may be able to suggest something. I have had mine over 8 years, but only diagnosed properly 4 years ago. My allergist diagnosed me and got me the treatment.
Main thing is you need a proper Consultant who deals with Vasculitis and some pain relief until you can see a Rheumatologist. Most of my USA/Canadian and other people all see Rheumatologists, but here I think most see Nephrogologists or Vasculitis/Kidney specialists. Get on to Vasculitis UK and they will give you a list of hospitals/consultants and perhaps you can get a 2nd opinion or further advice. Soon as you can see someone the better and can get on the right track. I do not know if yours is cureable or not, mine is not, but you can go into remission. But its not the end and good things are happening with research al the time now, so hopefully one day a cure will be found for all of us.
I am on 40mg x 2 daily of Omzoprazole because I have Vasculitis of the gut and that is one of my flares, it attacks my gut. I have been on steriods over 9 years now, so on high dose but it does work. No gut pain unless in a flare. I know the gut pain is awful, really awful. Mine feels as if I have been shot. Had lots of things with my illness, operations but the gut one is the worst of all so I understand. I was on Lanzoprosole for a time, but it stopped working and was put on the other. You may need to see a gastro consultant too, I highly recommend you see one with Vasculitis knowledge or one recommended by your consultant. I say this because I have bowel trouble, my local hospital has been useless. My Consultant at Addenbrooke's found one in London and I have seen her and she is marvellous, she knows what tests to have done re the vasculitis but cannot treat the vascultis but will liase with my Consultant.
Sorry about the waffle I know what it is like to have these things thrown at you knowing nothing about it, plus its scary and lonely which makes us so much worse. You can always ask me, but I hope you find one of the groups helpful and get the answers you need. But know there are lots of things in the pipeline, USA and Canada doing so much research for this awful disease. I have friends who are ex medical students with my disease and in the USA/Canadian medical system and they go to seminars etc, they give me hope.
Bless you and I hope you get the Consultants you need, Vasculitis UK helpline will help and tell you what to do, they did me, they tell you your rights on everything.