This is a continuation from my last post.
When I met with the family doctor, I described the myriad of symptoms that had been plaguing me for the last six months— from my barren-dry eyes and mouth, to my ongoing fatigue and newly-occurring joint pain.
Describing all of the health issues I had been going through, I expected the doctor to be horrified by my symptoms. But instead, his reaction turned out to be completely blasé. For instance, when I recounted how the joint pain in my fingers was so excruciating, I could barely hold a pencil (let alone write my final exams), he countered, “Maybe you’ve been texting too much?” with a definite eye roll.
Despite his skepticism that I was truly sick and in pain, I must have looked frazzled enough, since he recommended that I take a blood test.
When my blood work came back from the lab, I received a phone call from the family doctor’s office stating that I needed to come back in. That’s when I began to worry; as they say, ‘no news is good news’. So the fact that they had something to tell me made me wonder what was up.
When I saw the family doctor again, he had a very serious composure. He wouldn’t tell me what was wrong, he just explained that he was referring me to a rheumatologist, and that this specialist would review my blood test results in detail with me.
A rheumatologist? I thought. But isn’t that for old people?
I had to wait several months to see the specialist; unfortunately, the Canadian healthcare system didn’t take into account the severity of my symptoms— I just had to get in line and wait.
My mother insisted on attending the rheumatology appointment with me. By this time, I had turned 20 and was run down by the ongoing health issues I was experiencing while trying to balance my hectic school schedule. The one thing that kept me going was this feeling that it would all be resolved soon.
During the appointment, the rheumatologist explained that I had had a positive ANA result. ANA stood for antinuclear antibodies, and it meant that my immune system was attacking itself. He went on to explain that this meant I had an autoimmune disease, and asked me if I had any family history of autoimmunity. This being the first time I had ever heard of the term ‘autoimmune disease’, I told him no.
The problem, my doctor explained, was he could not tell from my lab results exactly which autoimmune disease I had. From reviewing my symptoms, it sounded like I had a condition called Sjögren’s Syndrome, but my ethnicity and age fit the profile of someone with Lupus. He went on to describe even more serious diseases that I could have; by the time he got to Lymphoma, I was almost in tears.
I would have to undergo a series of medical tests in order to figure out what autoimmune condition I really had. As a result, the rheumatologist was referring me to an ophthalmologist and an ear-nose-throat (ENT) specialist.
I waited another number of months for my follow-up appointments with these specialists. The ophthalmologist conducted a Schirmer-Rose Bengal test on me, which involved inserting small slits of paper between my eyeballs and my eyelids to measure moisture levels, then putting colored eye drops into my eyes to dye the dry spots, so they could be easily identified.
The end result? My eyes were Sahara Desert dry!
The ENT specialist, for his part, took a look at my ears, nose and mouth. Not only had I had an oral yeast infection and dental caries, but I was getting recurrent infections, such as bronchitis and tonsillitis. I also had a salivary gland blow up to the size of a small apple.
The results were sent back to my rheumatologist. Despite not showing a positive result for SSA or SSB antibodies in my blood test, which would have resulted in an immediate diagnosis, the results of my other examinations confirmed that I had Sjögren’s Syndrome.
Hi Isabel! I’m so glad I found your page. I’ve been struggling for years with random symptoms such as extreme fatigue and brain fog, but since I’m relatively young and present as “fine”, I’ve always been written off as having anxiety or depression or needing to exercise. I’ve had my PCP do blood tests once a year for the past couple years, but no one ever thought to check my ANA (it had never occurred to me either that I could possibly have an autoimmune disease), so my tests would always come back “fine”. Last month I finally had a doctor decide to check my ANA, which was positive! I then saw a rheumatologist, who completely wrote me off, saying “most women have a positive ANA”, I should exercise, and “it’s probably nothing”. He reluctantly ordered a couple more blood tests and my SSA just came back positive. I am not going back to him.
Basically, I’m just saying I can relate to being written off and not taken seriously by healthcare professionals because I’m young, look fine, and don’t have “typical” symptoms.
Thanks for sharing!
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Whoops, I didn’t mean to post anonymously 😉
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Thanks for commenting Sarah! I’m sorry to hear that you struggled with autoimmune symptoms for years and were just written off. I hope the fact that your ANA and SSA came back positive after writing you off makes your rheumatologist realize his mistake and take other patients seriously in the future.
Thanks for stopping by Autoimmune Warrior and I hope you find a new specialist who is more empathetic. Best wishes to you 🙂
Interesting. A friend has this disease, she thinks I have it, I have several autoimmune diseases.,Soo I know I can get more than one. So, I’m searching your symptoms. I, don’t got dry eyes mine water up and tears like wate come out., I got pains all over,in arms, legs n feet. I’m, do tired I can’t seem do do much no more. I also diabetic,trying get it under control,and now at7.5 AIC.I want to sleep all the time, after I take meds and eat, not cool.. I don’t think this like your symptoms,plus my neck and ears hurt. I’m deaf practually. Anything sound familiar to ur disease?
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Hello Linda! Before I was formally diagnosed I had joint pain in my fingers and toes. I also had fatigue.
In terms of your diabetes, have you tried using a continuous glucose monitoring (CGM) to help you lower your A1C? I’ve used the Dexcom G7 in the past. Here’s some more information: https://www.dexcom.com/get-started-cgm/sample