Six month problem, not yet diagnosed, inflamed aorta, inflamed artery to kidneys

[Shivanjali]

My niece started having stomach aches and loss of appetite about six months ago. The situation never improved and no diagnosis made despite umpteen trips to doctor, hospital, ultrasound, blood tests, etc. She has been in and out of dr and outpatients for many months now.

Three weeks ago, she had chest pains, difficulty breathing and collapsed, and was admitted to hospital with fluid on lungs. After tests, drs found she has inflammation around aorta, inflammation of arteries to kidneys, and this is probably what was causing the stomach aches. They suspect some sort of vascultis but this is yet to be confirmed. Still doing tests. She was stable for a while but had another episode of fluid build up after diuretic and is awaiting a kidney biopsy. Her parents are yet to meet the actual rheumatologist consultant who is overseeing the case,together with a cardiac consultant they have so many questions but don't seem to be getting answers. We don't know how serious the situation is, if life threatening or otherwise. I have printed off loads of stuff from Vasculitis website which has been really helpful but as we haven't seen consultant yet, hard to put forward questions.

I just wanted to know how long these things can take and how much we can push, even to demand appointment with consultant ? We are in Slough area.

[HiveMind]

Hi Shivanjali,

I felt I had to reply to you not to alarm you but when I was first diagnosed with Churg Strauss Syndrome (CSS) I was admitted to hospital with a critical heart condition, that the Dr's had no idea of what was causing it. The eventual diagnosis was that the miocardial sac around my heart was filling with fluid and preventing my heart muscle from functioning normally. At this stage my heart function was a ver poor 24%. I too had lungs filling with fluid which felt like I was drowning.

In CSS eosinophil levels (white blood cells) are extremely elevated and this eventually facilitates inflammation and tissue damage in all areas of the body. My heart and lungs are affected.

Your niece may not have CSS or any other type of Vasculitis but this should not be ruled out until ALL the tests have been done to prove otherwise.

I would insist on speaking with both the consultants (rheumatologist & cardiologist) to ascertain their diagnosis, what their treatment plans are, what the way forward is and also ask them the name of a Vasculitis specialist and contact them directly yourself if necessary. Speak to John Mills on this site to obtain details of specialists. (It was a cardiologist who diagnosed me with my CSS).

I also live in Berkshire, so please feel free to contact me privately on here if you want the name of my specialist.

Best of luck.

[cedric in reply to HiveMind]

I agree push the drs to get this matter resolved it could be nothing hope all goes well for your neice

[John_Mills Volunteer]

Hi Shivanjali, my guess, from your pseudonym and that you live in the Slough area, is that you are of Asian origin. It's silly to guess at diagnosis without knowing more than a few facts, but Takayasus arteritis comes to mind. Do press for an early meeting with the consutants.

If you would like to discuss this more please send a private message and do let us know how matters progress.

John

[Shivanjali]

Thank you for your replies. I think they will confirm diagnosis after biopsy next week and I will let you know how we get on. The vasculitis.org.uk and this website are such a fantastic resource. Thank you.