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Has anyone had what seem to be like new symptoms and worsening existing symptoms but no new lesions? I was dx with RRMS in 2014

A MyMSTeam Member asked a question 💭
Colorado Springs, CO

I was dx with RRMS in 2014 and I still feel so lost and inadequate in understanding this disease. I am struggling because I am grateful for no new lesions showing on my MRI's, but I feel like I am at a loss too. I lost my insurance in December and due to that I could not get my Ocrevus infusion. I was going through a lot of stress with my personal life and work, I would practice MMA, but ended up taking a step back from it in March because I noticed I was struggling with my balance more, my… read more

June 24
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A MyMSTeam Member

Yes, I’ve had MS since 2000 unfortunately mine is PPMS so I never get better but since 2008 I’ve been on different EMTs and my MRIs always come back with the same amount of lesions, but all of my symptoms have gotten worse and that’s what my neurologist says is that it’s from the damage that’s already been done. Stay on the DMT try to stay active as possible. and try to keep stress out of your life good luck.

June 24
A MyMSTeam Member

Standard MRI - Routine MRI scans (like typical T2 or FLAIR sequences) primarily highlight white matter lesions and are notoriously bad at catching gray matter damage, often missing more than 90% of them.

June 24
A MyMSTeam Member

Yes... look up PIRA

June 24
MyMSTeam

First, please know that feeling lost and frustrated after years of living with MS is completely valid — and you are definitely not alone in this experience. Many MyMSTeam members have shared similar confusion when symptoms flare without new lesions appearing on MRI scans.

Yes, existing lesions absolutely can cause ongoing Show Full Answer

First, please know that feeling lost and frustrated after years of living with MS is completely valid — and you are definitely not alone in this experience. Many MyMSTeam members have shared similar confusion when symptoms flare without new lesions appearing on MRI scans.

Yes, existing lesions absolutely can cause ongoing or worsening symptoms, even without new damage showing up. Think of old lesions like potholes in a road — they're already there, and certain conditions can make navigating them much harder. Several factors can amplify symptoms from existing lesions, including:

- Stress — both physical and emotional stress are well-known triggers for worsening MS symptoms
- Missing a treatment infusion — Ocrevus works to suppress disease activity, so a gap in treatment can leave the nervous system more vulnerable
- Fatigue and overexertion — intense physical activity like MMA can temporarily worsen symptoms
- Heat sensitivity — overheating is a very common MS trigger that can intensify existing symptoms The symptoms described — vertigo, sensory changes like burning or wet feelings, vibrations, balance issues, fatigue, and cognitive fog — are all recognized MS symptoms that can flare from existing lesion activity, not just new ones.

The most important next step is speaking with your neurologist about resuming your Ocrevus infusion now that insurance is restored, and discussing what's been happening symptom-wise. They can help determine whether this is a true relapse or a pseudo-relapse triggered by stress and the treatment gap.

June 24
A MyMSTeam Member

Progression independent of relapse activity (PIRA)

June 25

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