A journey through early MS symptoms, a UCTD diagnosis, and the slow, intuitive return to health
It started one morning with a strange sensation running down my spine, a sharp, tingling current from the base of my skull to my waist. Within days, the sensation spread to my fingertips and toes, then crept up my arms and legs to my elbows and knees. It felt like I was wearing the tightest compression socks and sleeves, painful, terrifying, and unrelenting.
I began to feel disoriented, confused. My balance faltered. I started driving into curbs. Holding a pen to write even a simple note became difficult. I visited the local doctor on the small island I lived on multiple times, but each visit ended with the same vague reassurance: “You probably caught a virus. It should resolve in a few days.” It didn’t.
At one appointment, the last one I had with him, he suggested I see a psychiatrist. I nearly leapt across the desk, but instead I stood, placed both of my hands on his desk, and said, “Because you don’t know what’s wrong with me, you’ve decided it’s all in my head and defaulted to the ‘hysterical woman’ label. This is not all in my head, you just don’t have the skills to help me.” He looked stunned as I walked out.
Desperate, I made an appointment with my gynecologist, a kind and sensitive doctor who listened carefully. He referred me to a rheumatologist and a neurologist.
A Battery of Tests
I was put through a series of tests by the neurologist:
• Visual Evoked Potentials (VEP) to detect optic nerve damage
• Ophthalmologic exams, including fundoscopy and pupil response, to check for optic neuritis
• MRI scans, which showed lesions consistent with Multiple Sclerosis
Bloodwork revealed an elevated ANA and other autoimmune markers, but I had not been given a clear diagnosis.
Then, one afternoon, I received a voicemail from the neurologist. No conversation. Just a blunt message:
“You have MS. You should get your life in order and be prepared to be in a wheelchair within five years. I’m leaving on vacation for two weeks. You can book an appointment when I return.”
I was devastated.
At the time, I had a five-year-old son, a faltering marriage, and a thriving gourmet shop and catering business. Everything was on the line.
When I finally spoke to the neurologist after his fishing trip, I asked if he was certain. His response?
“The only way I could be more certain is if I did an autopsy.”
I hung up the phone, never spoke to him again, and found a new doctor at Yale in New Haven.
The Long Road to Healing
It took over two years to recover from that initial flare-up. Since then, I’ve been diagnosed with Hashimoto’s Disease and, later, Lupus, or more precisely, “most likely Lupus, possibly Sjögren’s,” which ultimately landed me in the murky category of Undifferentiated Connective Tissue Disease (UCTD). Frustrating, yes. But also, in its way, hopeful.
Still, the weight of that first MS diagnosis changed the course of my life. Out of fear, and based on that dire five-year prognosis, I closed my business, believing I wouldn’t be able to run it much longer.
But being a mother of a young child made giving in to the illness a non-negotiable impossibility. I read everything I could find about MS, autoimmunity, and healing. I didn’t have a roadmap. I wasn’t a doctor or a nutritionist. I didn’t even fully understand what was happening inside my body. But I started listening to it, closely, intuitively, and slowly, I began to heal.
I would later learn the science behind much of what I was doing instinctively. But at the time, it came from a place of deep survival.
What Helped Me the Most?
I’ll share more in future posts, but here were the foundational shifts that started to restore my health:
• Rest: Honoring the fatigue, not fighting it
• Exercise: Gentle, intentional movement, especially walking and stretching
• Diet: Slowly transitioning to whole foods, anti-inflammatory staples, and learning how to nourish instead of restrict
• Removing stress: Letting go of toxic relationships and setting boundaries
As much as I tried to fight it, removing gluten from my diet has been crucial to my health. I LOVE bread, and as a baker, this was a tough change to make. But when I removed gluten experimentally, not only did I feel better, but my ANA and inflammatory markers dropped back into normal ranges.
When I moved to Europe, I decided to test the theory that European wheat is easier to tolerate for those with gluten sensitivity. I flared. Bloodwork confirmed it. So now, I eat a mostly vegetarian, nearly vegan, gluten-free diet, with a piece of fish once or twice a month, alcohol only a few celebratory times a year, and limited dairy.
Yes, it sounds restrictive. And I wish I could eat everything under the sun. But if I want to feel my best, I need to be mindful and eat, move, and live with intention.
That, in itself, is a kind of freedom.
What it Means When Your Labs Say One Thing, but Your Doctor Can’t Name the Disease
It often begins with something vague: fatigue that won’t lift, unexplained joint pain, a strange rash, or blood tests that come back with markers like elevated ANA (antinuclear antibodies). You’re told, “Something is going on with your immune system, but we can’t quite say what yet.”
For many, this is the confusing, frustrating space known as Undifferentiated Connective Tissue Disease (UCTD) or Latent Autoimmune Syndrome. These are not imaginary conditions, nor are they “pre-disease” states to be ignored. They are real, measurable immune system imbalances that deserve attention, support, and respect.
What is UCTD?
UCTD is a term used when a person has clear signs of autoimmune activity, such as positive autoantibodies and systemic symptoms (joint pain, fatigue, rashes, low-grade fevers), but does not meet the full diagnostic criteria for diseases like lupus, rheumatoid arthritis, or scleroderma.
A Hopeful Outlook: What the Research Says About UCTD
While a diagnosis of Undifferentiated Connective Tissue Disease (UCTD) can feel uncertain, recent research offers a reassuring perspective:
• Up to 70–90% of individuals with UCTD do not go on to develop a defined autoimmune disease
• For those who do, most progression happens within the first five years, often into conditions like lupus or Sjögren’s syndrome
• Early monitoring and lifestyle interventions may help slow progression (Ciancarella et al., 2025)
• Some people with UCTD remain stable for decades, and others even experience symptom improvement over time
Why Early Awareness Still Matters
Even when UCTD doesn’t evolve into a full autoimmune diagnosis, quality of life can still be impacted. A 2023 study published in *Clinical Reviews in Allergy & Immunology* found that many people with UCTD experience persistent fatigue, joint pain, and brain fog, even in the absence of a formal disease label (Rubio et al., 2023).
Recognizing and addressing UCTD is especially important in women of childbearing age, where it may affect pregnancy outcomes. Some studies show a slightly increased risk of preeclampsia and fetal growth restriction, so early care and monitoring can make a significant difference (Longdom, 2019).
Bottom Line
A UCTD diagnosis is not a life sentence; it’s a call to pay attention, not to panic. With self-awareness, supportive healthcare, and proactive lifestyle choices, many people go on to live full, vibrant lives with little or no progression.
What You Can Do
If you’ve been told your ANA is high, or that you “might” have lupus or another autoimmune issue but don’t meet criteria, you have options:
• Ask your doctor about UCTD or latent autoimmune syndrome by name
• Keep a symptom and diet journal, and request regular lab monitoring
• Consider gentle, immune-supportive strategies such as anti-inflammatory nutrition, gut health support, and stress reduction
Can Autoimmune Labs Normalize Over Time?
Yes. In lupus, for example, ANA titers, dsDNA, and inflammatory markers like ESR or CRP may normalize when the disease is inactive. In MS, MRI activity may reduce or stop progressing, and inflammation in the cerebrospinal fluid can decrease.
However, normal labs do not mean the disease is gone. They signal that the immune system is under better control—not that the diagnosis no longer applies.
This fluctuation is one reason many people feel dismissed when symptoms persist despite “normal” labs. Always remember:
“Your lived experience matters just as much as what shows up on paper.”
Final Reflections
I was diagnosed with MS 36 years ago. Even now, only a handful of friends know that I have an autoimmune disease. Not because I’ve deliberately hidden it, although, in the beginning, I did keep quiet out of fear that it might affect my ability to get work or advance professionally. But over time, the silence wasn’t secrecy. It was simply that I’ve lived a full, normal, perhaps even exceptional, life, filled with meaningful relationships, fulfilling work, and incredible travel.
Do I still experience fatigue, brain fog, joint pain, and other symptoms? Yes. More than occasionally, I do. But I’ve come to appreciate the remarkable ability we humans have to adapt, to persevere, and to live with discomfort without letting it define us.
My version of “normal” might follow a different set of rules than someone without autoimmune issues. But it hasn’t stopped me from living fully.
When I’ve had flare-ups, I’ve reminded myself:
You’ve been here before. You’ve healed before. You can do it again.
And so can you.
Most importantly, trust that your experience is valid. It is frightening when something is going wrong in your body—especially when no one can give you a clear name for it, and it feels like there’s nothing you can do to stop it.
Healing happens in small, quiet increments. Sometimes, it may not feel like you’re improving, because it can take weeks or even months to rebound from a flare-up. Still, those small steps you’re taking toward better health? They matter.
Keep going. One intentional breath, one moment of care, one day at a time.
You are not alone. Whether you’ve just been diagnosed with UCTD, are living with a confirmed autoimmune condition, are navigating overlapping symptoms, or are still searching for answers, there are compassionate, evidence-based communities and resources out there to help you feel seen, supported, and empowered.
Support & Advocacy Resources
**In the U.S.:**
[National Multiple Sclerosis Society (NMSS)](https://www.nationalmssociety.org/)
[Lupus Foundation of America](https://www.lupus.org/)
**In Europe:**
[European Multiple Sclerosis Platform (EMSP)](https://www.emsp.org/)
[Lupus Europe](https://www.lupus-europe.org/)
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Research Links & Context
– [Ciancarella et al., Clinical Experimental Medicine, 2025](https://pubmed.ncbi.nlm.nih.gov/40310587/)
– [Dyball et al., Autoimmunity Reviews, 2022](https://pubmed.ncbi.nlm.nih.gov/36031048/)
– [Rubio et al., 2023](https://pubmed.ncbi.nlm.nih.gov/36884206/)
– [Cavazzana et al., 2025](https://pubmed.ncbi.nlm.nih.gov/40156631/)
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