Saskatchewan. woman says she ‘suffered a lot’ as little-known illness went untreated
One day, 12 years ago, Victoria Gregg started to feel tingling on the right side of her face. She went to the Royal University Hospital to have it checked out, but was told not to worry about it.
When she woke up the next morning, that side of her face was paralyzed and she felt extreme pain in her ear, neck and shoulder.
At first she was told it was probably Bell’s Palsy and was given steroid treatment for it but no antivirals as she was five months pregnant at the time.
“I basically suffered a lot because without the antivirals the virus was not being treated,” she said.
“One day I could hardly hear anything, the next day extremely sensitive like even hearing my youngest children speak, I would be sitting on the floor covering my ears because it was just hypersensitive hearing.”
After having the baby, Gregg, who lives in Perdue, continued to search for answers. She was finally able to see a neurologist and was diagnosed with Ramsay Hunt syndrome a year after the first symptoms began. She then received treatment, but due to the delay, she did not fully recover.
The syndrome is caused by the varicella-zoster virus, which also causes shingles and chickenpox. It usually infects a facial nerve near the inner ear, causing weakness, inflammation, and sometimes pain in the surrounding areas.
Gregg said she was under a lot of stress as her husband at the time lost his job, finances were tight and she had two other children under the age of three. Gregg said the stress activated the virus in his body.
“Because I didn’t get the treatment, (the neurologist) said I’d probably never see any improvement with the facial paralysis again. However, immediate treatment can make your facial paralysis go away,” she told CTV News.
Gregg said she couldn’t inflate balloons or blow out candles and struggled to use different types of straws due to paralysis. She also suffers from extreme exhaustion and brain fog.
“Something that I struggled with a lot was knowing that, you know, if it had been caught, I might not be dealing with the continuous paralysis, the continuous pain, stuff like that. “
Victoria Gregg before and after developing Ramsay Hunt syndrome.
While Gregg has lived with the disease for over a decade, many people are only learning about it now after Justin Bieber announced he had it last week.
In a video posted to Instagram, the 28-year-old pop star could be seen struggling to move the right side of his face as he explained the extent of his symptoms.
Bieber had to postpone his upcoming shows because of his diagnosis.
“It’s pretty bad as you can see. I wish it wasn’t, but obviously my body is telling me I need to slow down,” he said in the video.
Gregg, who was also 28 when she had him, said she hoped Bieber would be able to make a full recovery.
“It’s sad that Justin Bieber has to go through this and know what he’s going through. I pray it doesn’t affect his career. You know it affected my ability to sing, I hope it’s not not the case with hers,” she said.
“Ramsay Hunt Syndrome doesn’t care if you’re popular or not, it’s a stressor, right? So this virus can kick in whenever your body is worn out.
Gregg hopes Bieber’s story will bring more attention to his condition.
“If he can bring more knowledge and help people get a good diagnosis and bring more knowledge to the medical community to bring proper treatment to people, then I think that’s a blessing in a way.” , she said.
“With it, there are so many people who realize they have it too and have been misdiagnosed, some of them for years.”
Dr. Matthew Burke, a neurologist at Sunnybrook Health Sciences Center in Toronto, said many different things can trigger Ramsay Hunt syndrome.
“Typically, reactivation (of the varicella zoster virus) happens in older people when their immune system starts to decline a bit. The other major risk factors would be, in the same vein, any medical condition that leaves a person in an immunocompromised state,” he said.
“Reactivation can also occur with transient types of impacts on the immune system such as stress, physical injury.”
Burke reiterated that the condition can be treated with antivirals.
“About 75% can fully recover, but that recovery can still happen over weeks or months. There is a lot of variability from patient to patient. Certainly, there are patients who may not fully recover and who may have persistent deficits. »
Bieber said he was confident his face would return to “normal” and that he was doing facial exercises and resting.
Justin Biber talks about his diagnosis of Ramsay Hunt Syndrome in this screenshot. (Instagram)
As for Gregg, she always has flare-ups whenever she’s under a lot of stress and says every time is different.
“Every time I’ve had a relapse I haven’t really had more paralysis until last month when it affected the opposite side of my face.”
Gregg said May is usually a very stressful month and she tries to be proactive.
“I backed off and tried not to do the same…I’m not perfect. I’m still overdoing it and having flare-ups, but you know, rest when you can and if you feel like you’re starting to get tired, act on it.
Even after his initial diagnosis, Gregg said he met doctors who had never treated someone with Ramsay Hunt syndrome.
“It’s considered a rare disease, but it’s actually not that rare. There are just a lot of misdiagnoses like Bell’s palsy,” she said.
“Getting the doctors to recognize this is a big thing. When I was in the clinic for my last outbreak, the doctor was so excited he had never seen a case before.
Gregg encourages others who think they have Ramsay Hunt Syndrome or something like that to keep asking questions until they get the correct diagnosis.