Are my new symptoms signs of MS progression?

My last magnetic resonance imaging (MRI) scan was on May 1, just ahead of an appointment with my multiple sclerosis (MS) healthcare provider six days later. The MRI showed that my MS was stable, meaning I had no new or active lesions. I was pleasantly surprised by these results because I’d experienced a couple of new symptoms earlier in the year that I’d attributed to MS.

One of them was increased urinary frequency, which lasted three weeks. The frequency was mild to moderate, which was uncomfortable but tolerable. I carried on with my regular routine apart from more trips to the bathroom. I was confident it wasn’t a urinary tract infection.

But when it started to interfere with my sleep, I notified my doctor. Before we followed up any further, it spontaneously resolved.

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Another new symptom that hasn’t disappeared is decreased thermoception, or the sensation and perception of temperature, in my feet and lower legs. One morning in April when I got into the shower, the water was too hot on my upper body. As I adjusted the temperature, I noticed a clear difference in how the water felt on my feet and lower legs compared with how it felt on my upper body. While I could feel it on my feet and legs, it wasn’t hot or cold. It’s hard to explain, but it didn’t seem to have a temperature.

I turned on the cold water to see if there was a difference. Again, it was cold on my upper body, but there was no temperature sensation in my lower limbs. Thermoception appears to return to normal about midway up my calf on both legs.

My doctor and I both expected the MRI to show changes based on these two new symptoms, and we were surprised when it didn’t. We decided to continue monitoring the altered thermoception’s severity and any new symptoms that might emerge, and I’ll return for a follow-up appointment in six months instead of nine. I’ll also have another MRI in 12 months instead of 24. We decided not to change my disease-modifying therapy (DMT).

A topic to discuss with my doctor

Last week I read a headline, “‘Hidden’ Signs May Signal Subclinical Progression in Early MS,” that caught my attention. The story described an October 2023 review article published in the Journal of Neurology that challenged the current practice of assessing MS disease activity by looking only at relapses and new lesion activity in MRIs.

I’m not early in my illness, but based on my recent experiences, the headline about “hidden signs” and “subclinical progression” piqued my interest.

Urinary frequency and altered thermoception weren’t mentioned in the original article, which offered examples of subclinical disease activity such as cognitive impairment, depression, anxiety, fatigue, and migraine. While these things are associated with MS disability, they aren’t identified by an MRI scan, which highlights specific areas of inflammation in the brain and spinal cord.

Why is this important? Because people with MS and these so-called hidden symptoms may be considered to be stable, with no active disease activity, when they might actually may be experiencing a worsening of their condition.

And why is that important? Because it could affect treatment strategies. Perhaps patients and their doctors might consider changing DMTs or adjusting medication dosages. Timely changes to a DMT are vitally important to preventing the progression of MS and limiting the disability associated with this disease.

Although the article’s content wasn’t directly applicable to my situation, I plan to discuss all of this information with my doctor. I wonder if my new symptoms are additional examples of subclinical disease progression.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.