Note: I am not a medical provider. Opinions in this article are based on my own research and personal experiences.

Mission: Diagnosis (Again)

In my original blog post, I wrote about the frustrating battle I had to a Hypermobile Ehlers Danlos diagnosis. Finally, providers moved away from MS and a generic label that never fit (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 a condition plays alone.

I continued to struggle with GI motility issues, I had insane excessive thirst, and my eyes were getting worse to the point of sealing shut overnight they were so dry. At this point, Sjogren’s Disease 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 diagnose and treat this systemic autoimmune disease know that? Nope. Did they like it when I tried to bring it up? Absolutely not. But I was getting passionate about patient advocacy at this point and (respectfully) spoke up often.

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” despite research that says otherwise.

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. Something was missing.

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 was finally confirmed. The validation is STILL everything to me. My heart goes out to anyone dealing with gaslighting, self-doubt and debilitating symptoms.

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 board certified patient advocate, 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, anti-centromere antibodies, CRP, ESR, RF, C3 and C4 to start. Please don’t hesitate to reach out if you have questions.

If you suspect you have Sjogren’s, I have a free mini class (18 minutes) that may be helpful. Plus, it comes with a free Sjogren’s symptom checklist! It is an introduction to my 2.5 hour masterclass on Sjogren’s. Get more details here.

Source: Johns Hopkins