If You Have MS, You Might Also Face MAS
You may have heard or read that once you’re diagnosed with one autoimmune disease, it’s likely you have developed or will develop others. I find it believable. My autoimmune journey certainly doesn’t begin or end with multiple sclerosis (MS).
I recently came across a new syndrome that might explain it: multiple autoimmune syndrome (MAS).
A look at the different autoimmune diseases
Some autoimmune diseases you’ve likely heard of include celiac disease, Crohn’s disease, endometriosis, fibromyalgia, lupus, lyme disease, psoriasis, and type 1 diabetes.
Unfortunately, these and more than 100 others all share in common a messed-up immune system. A key reason why we need diagnostic testing to rule them out before getting an MS diagnosis.1-3
Of course, anyone can live with more than one disease, but people with MS tend toward autoimmune clusters that may include:
- Inflammatory bowel disease (IBD) (suspected for decades)4
- Type 1 diabetes (shared genetic risk factors and low Vitamin D)5
- Psoriasis (the most common autoimmune comorbidity?)6
- Autoimmune thyroid disease (one consequence of using interferon beta or alemtuzumab)7
Unfortunately, autoimmune disease clusters are a “thing” now. They’re known as multiple autoimmune syndrome (MAS), a new classification of disorders defined as the coexistence of three or more autoimmune comorbidities.8
According to one research study, MAS can occur “as a consequence of genetic susceptibility to autoimmunity. Certain pathological mechanisms are common to several autoimmune conditions.”9 These mechanisms include genetics, infection history, immune system function, family history, environment, and other factors.
It’s suspected that as many as a third of all people living with one autoimmune disease go on to develop more than one.10
My own autoimmune journey
I was diagnosed with MS in 2013, but there are other autoimmune diseases across my lifespan to consider.
Arthritis: Currently I’m exploring my joint issues. I’ve been diagnosed with osteoarthritis (OA) but would like to rule out other rheumatological conditions: ankylosing spondylitis (AS), psoriatic arthritis (PsA), and rheumatoid arthritis (RA).
The problem? A doctor diagnosed me with RA at age 25. However, my current doctor thinks I don’t have RA based on a single blood test and won’t send me to the rheumatologist for more tests. Meanwhile, the pain, stiffness, and swelling just gets worse, and all the over-the-counter fixes don’t help. My mother had both RA and OA. The fact I have MS makes it likely I have both, according to some research.11
IBD: I also received this diagnosis 30 years ago. Do I have the standalone disease, or is it just a symptom of MS? Hard to say, it’s likely I had MS even back then. IBD could also be an MS medication (Tecfidera) side effect. I’m currently taking a medication vacation from Tec with my neurologist’s blessing for this reason.
Meanwhile, my current primary doctor doesn’t acknowledge IBD as a freestanding diagnosis. My medical records from back then aren’t on file. But without some sort of captured diagnosis, she’s doubtful. Does she think I’m imagining that day back in the early 1990s when I was given detailed instructions for dealing with IBD, with medication as a next likely step?
Preeclampsia: I experienced this with both pregnancies in the 1990s. The jury’s still out on whether this pregnancy condition qualifies as an autoimmune condition. Recently, however, scientists acknowledge its immune system connections and are chasing down new links.12
While preeclampsia isn’t linked specifically to MS, it shares risk factors with other ADs like RA, thyroid disease, and type 1 diabetes.13
Syndromes or symptoms?: Peripheral neuropathy and Raynaud’s phenomenon are two other autoimmune conditions I experience as well. I deal with both, but, again, it’s unclear to me whether they’re just symptoms of other autoimmune conditions or separate diagnoses in their own right.14,15
These also go ignored by my primary doctor. I’ve stopped bringing them up because it’s clear she thinks I’m a hypochondriac. Regardless, I still need to treat their pain, discomfort, and dysfunction.
Does an additional diagnosis even matter?
Honestly, without a diagnosis, I’m on my own to deal with said pain, discomfort, and dysfunction. A diagnosis would make treatment easier, more affordable, and more effective.
MS researchers also suggest clarity on potential autoimmune diseases and the MAS condition could help predict responses to therapy. With proper diagnoses, my neurologist and I could make more informed decisions about DMTs—after all, some of these drugs, while helping treat MS, might worsen (or improve) other autoimmune conditions.9
What to do? I’ll keep pushing for clarity. At the end of the day, my stomach still hurts, my feet are still ice cold on the hottest days of summer, and I shouldn’t, at age 55, be hobbling around like I’m an octogenarian every time I get out of my chair. Oh, and let’s not forget... I still have MS.
What does your autoimmune journey look like?
Were you misdiagnosed with something else before receiving a MS diagnosis?