MSing the Mark: Sjögren’s Mimicking Multiple Sclerosis
Note: I am not a medical professional. Opinions in this article are based on my own research and personal experiences.
I was shocked to see a Medium article that I wrote over a year ago was still being read with nearly 1,000 views. Truthfully, I wrote it for personal therapy and never logged back in. You can read MSing the Mark: Ehlers Danlos Syndrome Mimicking MS with my health story here.
Mission: Diagnosis (Again)
In my original article, I wrote about the frustrating and depressing battle I had to a Hypermobile Ehlers Danlos diagnosis. Finally, providers moved away from MS and a generic label that never fit me (ME/CFS). I was so thrilled to finally have answers and start exploring interventions to ease symptoms.
I was an idiot. As anyone with chronic illness will tell you, it is very rare that conditions operate alone.
I continued to struggle with GI motility issues, I had insane excessive thirst, and my eyes were getting worse — pain and dryness to the point of sealing shut overnight. At this point, Sjogrens was on my radar and I knew a lip biopsy was my best bet to diagnosis as my labs were not supportive in my quest. 40%-60% of Sjogren's patients are seronegative — meaning they don’t have the traditional bloodwork that shows Sjogren's. Did my rheumatologists who are supposed to diagnosis and treatment this systemic autoimmune disease know that? Nope. Did they like it when I tried to bring it up? Absolutely not.
I didn’t think it could get any worse than the first rheum telling me to “get on with my life and quit seeking specialists.” Oh, she was tough to beat, but, man, two others sure tried. I was told my symptoms were “not of concern.” I was told my positive anti-centromere antibodies was “a worthless test.”
With only a barely positive ANA and anti-centromere antibodies, I did not neatly fit in a box. And if I have learned anything about rheumatologists — they are “in-the-box” thinkers. If it didn’t show on paper, I must clearly be an anxious hypochondriac.
MSing the Point
At the risk of sounding like a broken record, MS came up AGAIN. Making Hypermobile Ehlers Danlos Syndrome take all the blame for my evolving symptoms didn’t quite feel right. It felt like someone was reading me a book, but only reading every other line.
I started to experience heavy, stiff legs to the point of struggling to walk unassisted or falling (not cool for someone with hypermobile joints). I even lost my vision a couple times within one month. One eye would also droop a bit. It prompted another brain MRI for Multiple Sclerosis— it was normal (again). Any number of differentials could have been considered at this point: Sjogren’s, Polymyositis, CIPD, and Myasthenia Gravis to name a few. I’m starting to think docs get a commission for every confirmed case of MS.
“It is often difficult to distinguish between primary-progressive MS and Sjögren’s syndrome.” — Johns Hopkins Sjogrens Center
Due to my anti-centromere antibodies, I had been going to a Scleroderma Clinic. At my second visit, I finally got what I had been asking for: a lip biopsy or minor salivary gland biopsy. She wasn’t happy about ordering it and even made a point to say, “I still won’t treat you if you have Sjogren's.” Cool. You’re a peach. Just gimme the lab order.
In August of 2023, my lip biopsy came back definitively positive for Sjogren’s. A diagnosis I was sure I had for two years finally confirmed. I wasn’t crazy. The validation is STILL everything to me. My heart goes out to anyone dealing with gaslighting, self-doubt and debilitating symptoms. Let me know if you’d like an article on how to kick start a stagnate diagnosis journey. I learned SO much on my journey.
Sjogren’s symptoms that may mimic MS
So, how did I end up on the MS train again (and have that be wrong…again)? Sjogren’s is a systemic autoimmune disease that can impact any organ in the body and commonly presents with neurological symptoms. In fact, neurological symptoms can start even years before the dryness manifestations.
So, here’s what you came for — some common neurological symptoms (not an extensive list) commonly experienced by Sjogees that can mimic MS:
· Dysautonomia, such as POTS or Orthostatic Hypotension
· GI complications (likely due to autonomic dysfunction) that may cause dysmotility, SIBO, GERD, etc…
· Small Fiber Neuropathy that causes tingling, burning and pins & needles. Please note this is NOT diagnosed via EMG. You need a punch biopsy for a SFN diagnosis.
· Trigeminal Neuralgia can cause horrible face pain.
· Mononeuritis multiplex, which occurs when there is inflammation of small blood-vessels. This can result in weakness and or even paralysis of muscles.
As a patient advocate in training, it is my hope to help others cut time to diagnosis and treatment, especially with connective tissue and autoimmune conditions. If you have these symptoms and MS has been ruled out, please consider asking your providers for an ANA panel, including SSA, SSB and anti-centromere antibodies. Please don’t hesitate to reach out if you have questions.
Source: Johns Hopkins
