I have a question. Why do doctors bow to either of these two? Without one or the other it's almost impossible to get a diagnosis even though you have all or most of the symptoms and signs on and in your body.
It really does seem as if unless you have one of the gods you are left in no-mans land. Little if any appropriate treatment and shunted from one department to another. With no-one willing to take the lead, time and care.
These "doctors" totally forget that people can have a disease without one of the gods being present or someone else can test positive to one of these gods and not even have a disease.
Sorry to say this but I never thought my out of control off the radar ANCA might be envied. Even with my diagnosis of GPA, I have no idea where the disease will hit next. Relapse is definite. Currently we are looking at damage to my central nervous system. Getting my ANCA down into measurable range has only recently become a goal after more than two years of fire fighting. The only good thing about vasculitis is that we are all different and there isn’t a standard pathway that works for most people, which means we have to be treated very carefully & everything investigated. It’s exhausting. I’m also shunted from one dept to another and now have 8 consultants. It’s nothing to do with my ANCA but the complexity of vasculitis. I take heart from other people saying that over time it’s possible to adjust.
Hi, it's not envy. Anger at doctors many of which do bow down to ANCA and ANA and who seem to think if a patient has a negative results then they can't/don't have anything worth their time. Or worse with some that your symptoms are not real and the rashes which have a positive biopsy results are of no consequence. Some have tried to prescribe Dapsone, totally disregarding the fact you have lung disease so can not have it.
I don't envy you or anyone else with vasculitis of any kind. I don't want it either and I shouldn't have to fight for the right care and treatment and have to tell a doctor to read my notes as I have lung disease so can't have a certain drug.
I also know about asking for a referral which unfortunately are out of the health authority area. With some doctors you may as well ask for the moon.
I asked one of the doctors I see about the hierarchy of symptoms, and whether I should carry on telling them about my sore mouth, sore nose, weird toenail etc. He said yes, because it gave an overall picture, but also said that they wouldn't have any new treatment to offer. Whereas when my sight was at risk all the big guns treatment came out. The most annoying one for me is joint pain, as this can be so incapacitating, yet that seems to be something I have to live with.
My Vasculitis doctors are guided by my ESR, CRP, kidney stuff, my symptom reports and ANCA only every 3 months. So I wonder if you need to see someone who specialises in Vasculitis to get the help you need.
Yes it does seem that you are left to deal with the pains your self. The joint pain and strange spasms a GP prescribed Amitriptyline, that gave me nightmares.
The pains in the kidneys and blood in urine, scans and x-rays showed no stones or lumps or bumps. Blood tests still within normal limits so disspite blood in urine nothing will be done.
The UV rashes are on my back not where they expect to find them on the legs. The Lymphocytic rashes are on the legs and purpura and petechiae the fore arms and are not only in clusters but can also go in a line of 2-3 inches in length.
Abdominal pain and swelling they have decided is IBS even though the meds they prescribed for that actually made it worse to the point I nearly called 999. I didn't because the thought of someone poking and prodding it was unimaginable so took hubbies pain killers instead.
The heat surge's I've learned to live with although the increase in chest pains and thumping in the chest, even waking me at night is scary but again they are brushing it aside a little of importance.
All they do is order more bloods and say it shows nothing except abnormally high red cells, CRP abnormally high, and below the range for B12 Folate and vit D. Everything else is just within range. Negative ANCA and ANA.
So that leaves me up the creek without a paddle but with positive biopsies.
I've given up asking GPs for a referral, in fact I've given up going to GPs as I think I've developed an allergy to them.
Good luck with your treatment and hope you get into remission soon.