Investigations leading up to a systemic vasculitis diagnosis

This page covers:
  • Uncertainties in the lead-up to a systemic vasculitis diagnosis
  • Investigations in the lead-up to a systemic vasculitis diagnosis
  • Joining the dots in the lead-up to a systemic vasculitis diagnosis
  • Emergency admissions and a systemic vasculitis diagnosis

Uncertainties in the lead-up to a systemic vasculitis diagnosis

As people’s health worsened, it was common for doctors to investigate for other possible underlying conditions before considering vasculitis. These included other rare diseases, as well as serious but more common conditions such as cancer, multiple sclerosis, and infections. For some people we spoke to, vasculitis was suggested as the likely diagnosis but there was uncertainty about the type.

When Angharad’s doctors first suspected vasculitis, they had to do more tests to find out the type (Takayasu arteritis).

People told us that it was sometimes difficult for doctors to reach a diagnosis. Marie and Diane said they were told they were too young, while Lynn had “over ten second opinions,” but didn’t quite meet criteria for different conditions, including types of vasculitis. We heard from Brenda, Roberta and Peter that even very thorough investigations didn’t always provide doctors with the information they needed to diagnose vasculitis.

In spite of numerous investigations, doctors still didn’t know that Brenda had polyarteritis nodosa (PAN), a type of vasculitis.

Investigations in the lead-up to a systemic vasculitis diagnosis

Depending on their symptoms and what doctors suspected might be going on, people described having a range of investigations to rule out other conditions and confirm a vasculitis diagnosis.

Isabel had ultrasound and a temporal artery biopsy to confirm vasculitis. She felt pressure but “no pain.”

We heard, however, that some investigations could be quite upsetting and uncomfortable. Nicky recalled “a biopsy on some of the ulcers down below, which was a very unpleasant experience I have to say, you know, seeing this man coming at your nether regions with like a melon baller thing.”

Nicola had a kidney biopsy in the lead-up to her vasculitis diagnosis. It was “not the most pleasant.”

Wendy described a “shocking, difficult experience” when having a tongue biopsy. She contrasted this with a later temporal artery biopsy on the side of her head where the way this doctor talked to her meant “it just all seemed to be much more under control.”
In hospital, Claudia felt that she would have had more confidence if doctors had explained what they suspected and why all the investigations were necessary.

Joining the dots in the lead-up to a systemic vasculitis diagnosis

By the time people got a diagnosis of vasculitis, they had usually realised that they had something serious. Dean has a very rare type of vasculitis (Hughes-Stovin syndrome) and, in the lead-up to his diagnosis, doctors told him that they were sending his medical records to different parts of the country in an effort to get answers. People often spoke about needing someone who could “join the dots” or put the pieces of the jigsaw together. Mo noticed that this might be happening: “I knew by the way he was asking questions that ‘you’re the first doctor out of four or five that has any idea really what’s going on here.’”

After doctors realised how ill Jane X was, they “really did work hard” to get to the answer – vasculitis.

People sometimes felt that their vasculitis diagnosis had needed a kind of lucky break such as a particular person being on duty.

A junior doctor spent time with Karen and “put two and two together.” Specialists were there “within the hour” and diagnosed her vasculitis (“Churg-Strauss”).

For Charlie this happened when a doctor he hadn’t seen before “immediately looked at me and said, ‘I think I know what this is.’” Pete developed Bell’s palsy following an operation to improve his hearing. He went back to the hospital for advice without an appointment, and “fortunately” the doctors on duty made the vasculitis link.

Emergency admissions and a systemic vasculitis diagnosis

A number of people had reached a health crisis and emergency admission to hospital before vasculitis was diagnosed. These ‘blue light’ experiences – in Isabella’s case by air ambulance – created a diagnostic urgency. As Steve, Peter, Karen and Jane found, vasculitis can be diagnosed while people are in intensive care.

Steve was rushed to hospital “fighting for breath.” His vasculitis was diagnosed in intensive care.

Even shortly before an emergency admission it was possible for people not to realise that they were so seriously ill. Isabella recalled that she still thought she might have Lyme Disease, or “something that can be easily sorted.” And Angharad was coughing up a lot of blood during the night: “So obviously that made me feel quite panicky, but again, not enough to want to call an ambulance. [laughs]”