Relief today!

[mld78]

Over the last two weeks I have undergone 4MRIs 2 CT and aV/Q scan. Then yesterday I saw the third consultant in 3 weeks. I’ve seen rheumatology, gastroenterology and now respiratory. I had a two week referral as I’ve been coughing up blood and other symptoms.

Yesterday at the lung clinic the respiratory consultant read through all my notes and also queried why I only had one hearing aid.

He suddenly put pen to paper and suggested I have an ANCA blood test. Today I have done a little Googling and I feel so hopeful.

I’m almost laughing reading all the symptoms of AAV or GFA. It’s me being described. And I realise that other things I’ve experienced in the past such as pins and needles (now sadly left without feeling in my hands) may also be related.

Why do GP surgeries only allow you to discuss one symptom at a time when you have loads of symptoms that could be related to one issue? This has taken about two years of many GP consultations.

[Main1234]

Many of us have been “failed” by our GP surgeries .

Hope you are now on the way to a diagnosis. The vasculitis web site and help line offer excellent advice and support.

This group is also very helpful and supportive.

[mld78 in reply to Main1234]

Thank you. I really feel as if I’ve been failed by the receptionists. They won’t allow you to give info about more than one issue. I have given up with some things as I thought they weren’t as relevant. Pins & needles, nose bleeds and a crusty nose for example. Yesterday the consultant noticed my bloody hanky, as I’d had a nosebleed on the way to see him. It’s relevant he said. Anyway hoping blood tests show something useful.

[012703060610]

In the US, health care has become a business. My rheumatologist tried to resign as they were forcing him to do 15 minute appointments. He made the exact point you are discussing.....he can't talk to his patients about one symptom at a time. When I see him, I am there for at least an hour and travel quite far for his care and knowledge. I hate to say it but you have to really push for what you need. GP's often try their best, but in reality they aren't knowledgeable enough to be able to handle some of the harder specialists like rheumatology or pulmonary docs. It took me three solid years and flying all over the country to get a final diagnosis. I even went to Mayo, Brigham and NYU for further academic center consults. In the end, I have five different autoimmune disorders that appeared after I had severe COVID. Hang in there and fight for what you need. Glad you are reading up on everything which will allow you to be more prepared going forward. I suspect a rheumatologist will be your best friend. Please make sure you find one that understands more than RA, Lupus....you will need one that is going to closely monitor you. I saw three local rheumatologists after diagnosis and all three didn't know what to do with me. Now I travel across the country to see mine. He and my husband are working really hard to keep my spirits up and getting things in the right direction.

[Mooka]

At my surgery I can make a double appointment for more than one ailment. Your experience isn’t unusual when getting a vasculitis diagnosis. I went from one consultant to another passed around the hospital. Beware a positive anca result isn’t a definitive answer it’s only an indicator. If you do get that diagnosis you will need to make sure you are with a consultant that understands vasculitis. Good luck let us know how you get on. Please keep away from dr Google stick to vasculitis U.K. or the Lauren Currie twilight foundation There’s a lot of bad info out there.

[mld78 in reply to Mooka]

Thank you. Vasculitis uk info is brilliant.

[eh66]

My Vasculitis consultant reckoned I was probably ill long before it was recognised ( sinus and joint issues). Looking back just before I was hospitalised, my resting heart rate had shot up and my urine was bright orange. Even in hospital initially they thought I had reactive arthritis, until the "extra" blood test confirmed the worst. Followed by scans, 2 kidney biopsies and a lot of immunosuppressant infusions.

Good news; 2.5 years I am now in remission with no more infusions planned.

[Investigator1]

Hi mid78, it’s a sorry state of affairs when you’re suffering, and I agree it would be useful to know what is happening to your body. I will never generalise but before Covid there were good GP practices and those not so good and now the good ones have shown how good they are and the not so good ones have got worse. My GPs practice has become a joke, you can’t book an appointment in anything less than 2 weeks and they do alternate days walk in which generally means up to a 3 hour wait. I am changing my practice, it is run by a totally incompetent manager and zI would advocate others to do that if the service is bad, just check out where you do go. Nick.