hello everyone

[renidrag]

Welcome Eileen, I don't post or reply a whole lot but one thing I can tell you is all the advice you have gotten from everyone else should be heeded. I understand not wanting to make a fuss, but sometimes we just have to. It is a great idea to have an advocate go with you to your appointments, four ears hear most everything.
Dale

[jola57]

Eileen, do find a specialist that treats wegeners, do not settle for anything less. Even in UK with the hoity toity doctors you must expect to be treated with kindness and compassion and as to not making a fuss just look where it got you to. Make as much fuss as needed to get the doctors paying attention to your suffering.

[Jack]

The QE Medical center at Birmingham is where I attend and they run a Vasculitis research team. Everyone is always polite and interested in my opinion, but if you are showing active symptoms the students want to run experiments on you!

[eileenv]

Thanks Dale for your reply i have advice from this forum and after a terrible night no sleep at all i ahve rung his secretary this morning and ask if he could phone me, my friend who also came with me to the appointment also gave me the same advice.
I was a nurse for 25years and i'm used to looking after other people and always give this kind of advice, but when it comes to me i don't. the trouble as well was he has made me feel like a hypocrondiac and at first was coming up with sjrogrens until he did an eye srip test and that was negative. In his letter he has said i have unclassified connective tisue disorder, to day iam coming up in more purpera marks. I don't think he likes because i was staff a few years ago he also is clinical director of the hospitsl where i attend. I will keep you up to date as to what happens
Love Eileen

[Sangye]

Eileen, my first rheumy made me feel like a hypochondriac, too. (All the way through hemorrhaging lungs, massive blood clots, more blood clots, pneumonia, lung infiltrates, leg ulcers, bone marrow failure, pulse oxygen readings down to 76-- all objective signs that I was in trouble). Your signs/symptoms are real and serious. You may have to repeat that to yourself to undo the self-doubt he's inspired.

I'm happy to have a 3rd nurse on here, though. (Elephant and LightWarrior are the other 2) As soon as we get you to a proper doc with proper care, I imagine you'll join the team of naggers on here. Maybe I can take a day off....

[eileenv]

Sangye, thank you so much for your support, you don't know how much it means to me. I haven't heard as yet from the rhuematoligist, his secretary said it will take a time probally next week. I had leg lesions and he done a referal to dermatoligist an urgent one but she diagnosed discoid excema, but i'v seen excema and these were round big lesions now i'm doubting her diagnoses. I'm sorry to hear you have had such a rough time it sounds horendous, how are you know?. dose this site have a chat room? that would be nice. I have high nuetrophils and low lympthcytes and my white cell count was near the high end on my last bloods. What i don't understand about the ANCA is he told me in clinic that it was borderline but in his letter he it was slightly raised with the PR3 antobody of 31, when i got a copy it just had a - against the ANCA perhaps you can exsplain that to me if you don't mind. Did you have a biopsy to confirm your diagnoses? Thank you once again and that includes everyone that has been kind enough to reply .
Love Eileen

[JanW]

With that PR3, you definitely have something going on. ANCAs don't always have to be positive for there to be a diagnosis. I have a diagnosis yet no biopsy (as of yet --my surgeon took some during the surgery yesterday.

[Sangye]

Eileen, I feel that next week is too long to wait to talk to your doctor. My biggest concern is your "chest infection."

How much pred are you on?

If it were me, I'd go to the ER this weekend and get another chest x-ray, maybe a chest CT. If there is ANYTHING unusual on them, please don't leave without having another rheumy's input. Lung hemorrhaging often looks like "atypicaly pneumonia" on x-ray, and might not even look like a bad case of pneumonia. A CT will show the real situation. If a CT is clear, that's usually a good sign that your lungs are okay. I also suggest you bring a copy of the letter, labwork and any other medical notes you have. You might get a doctor with some brains, so you want to be prepared.

[eileenv]

Hi Sangye
I'm on 7.5 of pred at the moment, i had what i thought was a chest infection ( ihad a terrible cough and i could hear my chest crackling) but i never went to the docters which i should have done this went on for about 3 weeks. Then after a week i had what i thought was a cold and again aftrt about another week i had the same again both of these went on for about 3 weeks i now realise that these could have been my sinuses. I am still waiting for the consultant to ring me at least i can bring him up to date with whats happening and if he want to change any medication he can i'm on a reducing dose of prednisolone which was15 at the begining.
thanks once again any advice is much apprciated is the pr3 of 31 high? love Eileen

[JanW]

My PR3 is 96.7 but as my doc says most docs now don't correlate these numbers (positive/negative, how high on ANCAs and P3) with disease activity. It works for some people but not for all. He ran these tests to aid in diagnosis, but what he will follow are my symptoms and urinalysis (to monitor for kidney involvement) in determining whether disease is quieting down or not.