Disease can be hard to diagnose because of unusual presentation
When St. Andrews resident Ray Malcolm went to his doctor to be checked for a COVID-19 infection last year, he didn’t know that he would be starting on a path toward a diagnosis that would take a while to figure out.
“Prior to my being diagnosed with COVID, I had some issues that had been going on for a while. I was suffering from a condition where if I exerted myself heavily then I would be huffing and puffing and figure that I was going to pass out or faint. So, I did have this for a while. When COVID [hit me] in April of 2022, it really made a big difference. I could hardly walk to my van. I could hardly do anything in my home. It went downhill from there,” said Malcolm.
He says that he’d been seeing doctors for a while before this for what they thought might be congestive heart failure but the test results said that his heart was working well.
“We were kind of in mystery land. And then, when COVID hit, I went and saw them again and it took about until May or June to diagnose it as MCTD which is an autoimmune disease,” said Malcolm.
His main disease symptom was shortness of breath. MCTD often also comes with joint pain, and fatigue which Malcolm didn’t feel he experienced.
The difficulty in finding his diagnosis was in part due to how confusing the signs it leaves can be.
“This is how sneaky this disease is. The bloodwork says ‘Oh, you have a bunch of things happening,’,” said Malcolm.
For instance, his blood tests led the doctors to think that he might have lymphoma for a time but then later bloodwork contradicted those first results. This caused him to have to undergo further tests, for confirmation of lymphoma which were negative in the inbetween period between blood tests.
He explained that MCTD is similar to other autoimmune diseases that people might know about like lupus, scleroderma, polymyositis, or rheumatism.
In addition to being diagnosed with MCTD he also received a diagnosis of raynaud’s disease which is a condition in which your fingers feel numb and cold in response to cold temperatures or stress. This is a potential symptom in people with MCTD.
“Your fingers freeze from the knuckles down. They’re always cold; they’re always white and they’re aching,” said Malcolm.
Another of the symptoms of MCTD is it attacks your heart and lungs.
“They found out that my lungs were suffering from a condition called pulmonary fibrosis. That is a bad one because you have trouble breathing because you don’t get good oxygen to feed the blood,” said Malcolm.
He says that diagnosis for the condition, for him, involved mostly blood tests and CT scans.
Since his diagnosis, Malcolm has been on medicine for MCTD but so far hasn’t had much symptom relief.
“It’s made me more cognizant of just how fragile and how limited life can be,” said Malcolm. “I made 79 years. So, life doesn’t owe me anything. I’ve had a good life a very healthy, very active life. I did almost everything I wanted to throughout my life, so I’m pretty happy with where I’m at now, I just wish I could be healthier and keep on doing fun stuff,” he said.
Malcolm wants people to know that MCTD is out there and should be taken seriously if you think you have the symptoms.
“It would just be nice to let people know that [MCTD] is a very, very nasty disease,” he said.
He suggests that people who think that they or a family member have MCTD should go to their doctors and discuss it with them.
“Get to see your family physician as quickly as you can and give them all the information about what you feel and where your pains are, if you’re huffing and puffing or whatever. And then, hopefully, they’ll get you to see a rheumatologist, who is ultimately the one to diagnose you further,” said Malcolm.
