Are my new symptoms signs of MS progression?
An MRI showed no new lesion activity, so what does that mean?
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.
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.
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Andrew Scott
I was told that some new symptoms can be explained by existing plaques for some reason.
Ellen Lerner
I don’t know when my urinary frequency started. I know I’ve had it a long time probably Before I found out, I had MS. I just figured it was partially due from having five children in my 30s, and if that could still be the case, but there’s no way for anyone to really know. I have had MS or known about it since I was about 51and I am now 76. For the urinary. Frequency I take two drugs that I alternate every other day. One is solenificen Which is generic and the other one which was not generic but yesterday when I refilled it, it had just become generic and was called MYRBETRIQ. This combination of alternating every other day has pretty much not totally solved my urinary problem, but certainly has helped a lot. When I went to refill the script yesterday, the pharmacist said that I was the second person she had talked to there that was doing the same thing I was doing with the two medications . At least they are both generic because when it was non-generic the second one was much more costly. My MS in general,has not progressed at all, And I read an article recently talking about a new type they discovered of MS, which is not progressive and I think that is what I have. I have never had an MRI that showed active brain lesions so they must have been active at a time long before I ever knew I had it and I did not remember ever having symptoms before the very first one when I was 51something which was called transverse myelitis. That one I certainly could not ignore.
Laurie
As we age, our body has a harder time with damage. This also happens with many other medical conditions. Isn't this is why a large percentage of people who start off with a relapse remitting eventually end up with secondary progressive MS? I'm wondering if your symptoms are only for short periods, do you have relapse remitting MS? Also, how do we know that no new leisons mean no disease activity? We only know what's visible with current medical equipment. Does anyone know what information future medical tests will provide? I'm inquisitive, but have no medical training. If you aren't familiar, Pub Med is a great resource for many MS issues that have been researched by experts!
Ian
There’s been a shift in the last c.10 years. Some leading neuros now view MS as one disease and consider that progression (smouldering MS) is there from the start. So, even if the DMTs shut down relapses, the silent progression (smouldering MS) continues. Ageing also contributes to the progression (worsening). We really need add on treatments to address the mechanisms driving this silent progression.
Tom A
Hello Anne- Your observations on your seeming MS progression are not a new phenomenon. You can learn about it here: Smouldering-Associated Worsening in Multiple Sclerosis: An International Consensus Statement on Definition, Biology, Clinical Implications, and Future Directions https://onlinelibrary.wiley.com/doi/10.1002/ana.27034 ; and here: Smouldering multiple sclerosis: an international consensus https://gavingiovannoni.substack.com/p/smouldering-multiple-sclerosis-an?utm_source=post-email-title&publication ; there are many other places but these are new and can get you started. They are not “wacko” substandard references.
I hate to be the bearer of uncomfortable info to you or your readers here. There is a reason why most valid sources of MS info say there is yet no cure. If DMTs stopped everything, that would be a cure. They are very helpful and help people regain some control. They are not and end-all, however.
Urinary frequency can be managed, sometimes with meds, always with adult diapers.
Diandra De Leon
I also have RRMS and had urinary frequency. I had started taking pumpkin seed oil capsules for hair health recommended by a dermatologist . To my surprise it helped with my urinary frequency! As always check with your HCP but just wanted to share something natural that worked for me!
Luetta Ann Oldman
I was diagnosed with primary progressive.MS. About a year ago I went to Neurologist and was told no new lesions. I left feeling like I have battled MS but asking myself why do I have constant urinary runs and my head feels like its on fire. I am still tied to my walker and try to stand or take a few steps without walker I am very unstable. I see Neurologist in a few months but I feel I am not cured of MS and wonder if it ever goes away.
Janet Bennett
I've had urinary frequency and MS for years. A few weeks ago my GP prescribed Myrbetriq for my bladder problem, which was definitely disrupting my sleep. Since then, I've had several nights when I didn't have to get up at all. It's been wonderful.