Searching for a diagnosis still....

[unluckylissy]

Hi all!

I've posted in lupus, and hughes forum starting a few years back and I'm still undiagnosed! I've mentioned vasculitis to a few doctors but they never tested for it based on lack of serious skin symptoms. I have high white blood cell count, high eosinophils?, monocytes, and crp. I have livedo skin, chronic joint pain, low grade fevers, and rarely petachiae and small single blood blisters. I've had genome testing and genetic diseases are ruled out. I recently ordered my own ANCA test through a online lab and I'm awaiting results. I'm not sure if it is vasculitis but whatever I have does inflame my vessels at times and I have pinpointed a throbbing vessel but doctors have continued to be stumped.

I have a question regarding vasculitis, joint pain in particular what exactly causes the joint pain? Is it the vessels or the joint?

Any input appreciated😊

[JGK99]

All sounds like Vasculitis to me - maybe you need to change Doctors or insist on a specialist Rheumatology appointment - keep a record of all your symptoms too and if you have spots or lumps - photograph them and show them to the Doctor- as most of us know... you have keep pressing buttons and make sure Doctors are listening to you ..... good luck !!

[Alpsy]

Hi! I too think it’s Vasculitus from all them symptoms you say. It will be interesting what the ANCA test comes back with but this could come back negative and you still might have Vasculitus. I suggest too that you go back to your GP and ask for a Rheumatologist in your area or near you. You could speak to Susan or John and they will give you names of the ones nearest you. The Doctors you are with now are not doing you any favours I don’t think as they should rule out everything!!! Good luck and do it as son as you can xx

[amms43]

I agree with the two replies you already have and I agree about seeking out the helpline as John and Susan Mills will guide you in the right direction. Not all rheumatologists are experts in this field. Don't give up! I does sound like vasculitis and the ANCA test will not necessarily give you a definitive diagnosis one way or the other.

[unluckylissy]

Thanks everyone, I definently been keeping a photo book and all my labs and records. I've seen about 5 rheumatologist over the past 11 years and they were stuck on proving I had lupus but all those tests were always negative then they just gave up. .I had been reading and researching vasculitis most recently and seen lung involvement could be another symptom, and I just found my xray from this past winter that says "Chronic interstitial changes" that means scarring? I hope I'm one of the people that shows a antibody for vasculitis! I'm so tired of being sick and if there's any chance for improvement I really need it. I've been exhausted for 11 years and I can't take much more. Hope my results come early this week. I'm located in the U.S, Florida and I've travelled up to 5 hours to see doctors. My next step might have to be Mayo Clinic in Jacksonville.

Hope everones having a good😀weekend.