Deer Lake resident trying to find a diagnosis for her condition DEER LAKE KATHERINE HUDSON The Western Star

Toni-Lynn Blackmore said she has been unable to live her life for the past year because of an unknown ankle condition. — Star photo by Katherine Hudson

It’s been a year of questions and frustrations for Toni-Lynn Blackmore.

The Deer Lake woman first noticed a lump on her ankle last November. Not knowing what was wrong and feeling intense pain over the first few weeks, she visited her family doctor.

One year, four biopsies, six referrals and an abundance of pain later, Blackmore is no closer to getting to the bottom of her seemingly rare medical condition.

In a new study presented by the Fraser Institute, it is stated that Newfoundland and Labrador have one of the longest waits in Canada between seeing a general practitioner and a specialist consultation at 14 weeks. The second wait, from specialist consultation to treatment is on average an additional 13.2-week wait.

“Even though this started last November, I wasn’t really debilitated until about January,” said Blackmore. “That’s when the swelling started to spread and they started doing the biopsies. I thought that by the summer I’ll be all right and (my family and I would) be able to go camping.”

After her family doctor gave her antibiotics for the assumed infection in January — and when they didn’t work — Blackmore said he referred her to a dermatologist in Grand Falls-Windsor. Thus commenced the drawn-out journey of the 28-year-old jumping from doctor to doctor, and from diagnosis to diagnosis.

“I knew after a couple of different doctors ... that this is not going to be fixed within a few months. I knew that it was going to take time but I never thought that it was going to take a year without still having a diagnosis,” she said.

Blackmore said one dermatologist diagnosed her condition as vasculitis, a situation where blood vessels and arteries become inflamed, and in April, she said a second dermatologist confirmed it was Polyarteritis nodosa, when medium-sized arteries become swollen and damaged as immune cells attack them.

“We were satisfied when we had a diagnosis, even though it wasn’t necessarily a good diagnosis,” she said. “Now that we know what it is, it can be treated and I can move on with my life.”

She said the second dermatologist told Blackmore’s family doctor to prescribe her with a medication used to treat skin conditions. Blackmore said she was not told she should get her blood levels checked every week and became anemic, side-effects of the drug. She spent four days in the hospital before her blood levels came back up.

She was then referred to an internalist because her new diagnosis could seriously affect her internal organs. Blackmore said she waited about five weeks for the referral to go through from one doctor to yet another. Finally, she called and booked an appointment.

Into the fall
At the beginning of September, Blackmore saw the internalist in Corner Brook. She said the specialist did not believe that her previous dermatologist was correct in identifying the disease. Blackmore said the internalist did blood tests and wanted to refer her to a hematologist, a doctor that studies blood and blood-related disease, in St. John’s.

“I figured I would have to go to a bigger centre to get help, so I felt that this was the right direction,” said Blackmore.

While waiting for yet another referral to go through, she said she went back on prednisone, a steroid drug that treats inflammation and pain, but affects almost all areas of the immune system and has negative side-effects such as weight-gain and mood swings.

“I checked the mailbox everyday for the date of my appointment (in St. John’s). Nothing, nothing,” said Blackmore.

Now, in November, a full year after her symptoms started, Blackmore said she received the contact information for the hematologist in St. John’s and called the office herself.

She said she was then told that the hematologist would not be seeing her because he was unfamiliar with her blood condition and had referred her back to the internalist.

“We’re still sitting here like it’s Day 1. Whenever we think that we’re getting somewhere, we end up two steps back because one doctor says, ‘Well I think it’s this’ and another doctor looks at it and says, ‘No, I don’t think that’s what it is’ … I can’t help but be negative about it and say it’s just going to be another doctor who doesn’t know what it is. I’m tired of being sent around,” she said.

Passing her off
Blackmore’s husband, Shane, said he feels as though they are at a dead-end.

“Everyone’s passing her off. No one wants to deal with it because no one knows what is going on. We don’t know where to turn to. My wife is lying on the chesterfield and can’t move. It really hurts me when I see her going through that much pain,” he said.

“Besides the physical pain it’s a lot of depression that comes along with it. It’s debilitating to the point where I can’t do my housework, I can’t be a wife, I can’t be a mother to my kids,” said Blackmore.

“The medication is helping with the pain but it’s not treating the disease. Why take this stuff if it’s not treating the problem? It’s just hiding the problem,” she said. “I haven’t lived my life for a year. I realize there are a lot of people in hospital and they’re sick and they know what they have.

“They’re being treated. For me, this is bad. This is a year of pain and depression and being cooped up in a cage,” said Blackmore.

The Blackmores, tired of being “passed along” from specialist to specialist and finding it difficult at times to get their message across, said they have now attempted to take things into their own hands.

This past weekend, they contacted Health Minister Jerome Kennedy who has passed along their concerns to Western Health.

Blackmore said she understands that her case must be extremely rare, but says there must be someone out there to help.

“I’m not saying that any one doctor doesn’t know what they’re doing,” she said. “ ... But it’s just coming up that they don’t know what else to do.”

Regional Director of Communications for Western Health, Heidi Staeben-Simmons, said she could not comment on this specific case.

Calls to Western Health’s vice-president of medical services, Dr. Ken Jenkins, were not returned.