Here We Go Again: I’m Recording My Symptoms, Just in Case

It’s something I’ve always read about in my research on myasthenia gravis (MG). I’d always hoped it would never happen to me. I went so long trying to figure out MG that having to go down that road all over again is daunting. Quite frankly, I don’t want to do it.

What am I talking about? Comorbidities.

A comorbidity is the presence of two or more diseases or medical conditions in a patient at the same time. There’s a correlation between having one autoimmune disease and acquiring others as we age and the disease progresses. Up until this month, I only had the one autoimmune diagnosis to deal with: myasthenia gravis.

I’ve been dealing with sporadic joint pain and swelling for years. I’ve chalked that up to my joint hypermobility disorder. My finger joints would always hurt and swell more if I overdid my sculpting, for example. My toe joints would feel like they were jammed when I was walking, as my physical activity increased. There’s always been something to explain the symptoms.

Until there wasn’t.

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At the beginning of the month, I began experiencing intense nerve pain that was different from what I’ve always experienced in sensation type, duration, and severity. This led me to call my primary care physician (PCP) to figure out why my nerve pain was on the fritz. I had my appointment in the middle of the month, and she ordered enough testing that required nine — yes, nine — tubes of blood to be drawn.

Some of those results have come back.

Two of the primary suspects are lupus and rheumatoid arthritis (RA). Both seem to be common comorbidities in the MG population. Some of my disease-specific testing has come back inconclusive or negative, while testing that indicates either RA or lupus has come back positive. Regardless, it looks like a referral to rheumatology is in my near future.

Wonderful. Another specialist to add to my care team.

But is that really a bad thing? I finally have an amazing care team here at my home base in Wisconsin, and I truly don’t believe my fears of a never-ending diagnostic pursuit will come to fruition. As soon as I expressed concern about my symptoms, my PCP got me in, scheduled the tests, and laid out her plan, which would be dependent on further test results.

The proposed rheumatologist is at a different Veterans Affairs facility from the two I already visit for primary and specialty care. The new doctor would be between the two; my primary care is 20 minutes away, and my current specialty care is just over three hours away. The rheumatologist’s clinic is about an hour away. Not too shabby.

Adding symptoms, doctors, and likely a diagnosis is frustrating, depressing, annoying, and a little relieving. There may be an explanation for the symptoms, which, for anyone who has fought to be heard and get a diagnosis, can be comforting. It is for me.

There are days when I feel like I still must justify how sick I am. I track all the bad stuff  — and the good stuff — and ask my husband for validation. I don’t know if this practice will ever go away, considering I fought for nearly eight years to be seen and heard by my previous care team.

I know I don’t have to do that now, as I’m seen, heard, and believed. But old habits die hard. Still, I’m thankful I have the support in place to take on these new challenges.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.