I have had recurring high fevers, rigors, awful joint and bone pain and so much more. My blood tests showed me ANCA positive & it was not looked into. That was in 2006. In 07 I was diagnosed with ulcerative colitis so every time I then went to my GP with more and worse symptoms, it was ALL put down to the UC but I knew there was something more wrong. I suffered for over 10 years as a result. No one has the specific skills to get a diagnosis and it seems that auto immune diseases are now spiralling Into epidemic figures.
For example, I was told that UC was 1 in every 100,000. When I went to clinics, I saw many more and just from the small place where I live. I see many more who have inflammatory bowel disease but the powers that be don't seem to want to publish the real figures.
Now, I have been battling vasculitis, undiagnosed for 8 years, and was scared I was going to die and on many occasions. The fact that they use steroids and immune suppressing drugs, for IBD, probably has saved my life but not by design.
I am now going through the long process of diagnosis and have had Bronchoscopy and lung biopsy, kidney and liver biopsy but the rheumatologist, who, by default, deal with these diseases, are not specialists and so it can be a very painful and long road to diagnosis and then real treatment. I am told they believe me to have GPA but that the lung tissue keeps changing from a glass like appearance and then goes clear. I am so frustrated as I am still suffering yet no one will give the green light for the cyclophosphamide ( chemo) to properly address this awful disease.
I am now. Wing referred to a specialist centre, could be Addenbrookes or Birmingham, I don't know as yet. We really need to be able to get a referral much sooner, I am sure lives are lost due to the true specialists not being available to all. I hope that I get seen soon as this life is so hard when suffering from 3 chronic conditions. If I had listened to my GP and not kept on then I would still be being conned off. This is a killer and needs addressing much sooner. I am not being dramatic when I say I fear for my life.
Please do badger tour GP and even go to A&E if you feel able. When I bet the attacks, I am unable to move from my bed. I mean, I can't even get to the loo. I'll leave the rest to your own imagination. It's a living nightmare.
The single most frustrating thing is people often say " well, you look just fine" I knkw they mean well but it's so hard to explain and I now sometimes say nothing at all.