When your legs suddenly feel heavy, your vision blurs, or you canât hold a cup steady, itâs natural to panic. Youâve been here before - this is multiple sclerosis, after all. But is this a relapse - a sign your disease is actively attacking your nervous system - or just a pseudorelapse, a temporary flare-up caused by something simple like a hot shower or a urinary infection? Getting this wrong doesnât just cause stress. It can lead to unnecessary steroids, hospital visits, and even serious side effects like high blood sugar, insomnia, or mood swings - all for a problem that doesnât need them.
Whatâs Really Happening? Relapse vs. Pseudorelapse
A true MS relapse is caused by new inflammation in your brain or spinal cord. Itâs not just your symptoms getting worse - itâs your immune system launching a fresh attack, damaging the protective coating around your nerves (myelin). This damage shows up on MRI as new or growing lesions. Symptoms last at least 24 to 48 hours, often longer, and donât improve just because you rest or cool down. A pseudorelapse, on the other hand, is not new damage. Itâs your old, scarred nerves acting up because something else is throwing them off balance. Think of it like an old wire with frayed insulation. It works fine under normal conditions, but when it gets hot, wet, or tired, it shorts out. No new inflammation. No new lesions. Just temporary chaos in signals that were already compromised. The key difference? One is disease activity. The other is a system overload.Common Triggers for Pseudorelapses
Pseudorelapses arenât random. Theyâre tied to very specific, often avoidable triggers. The most common ones:- Heat - Hot showers, saunas, summer heat, even a fever. About 60-80% of people with MS whoâve had optic neuritis get Uhthoffâs phenomenon - vision gets blurry or double when their body warms up. It clears in minutes once you cool down.
- Urinary tract infections (UTIs) - This is the #1 trigger. In fact, nearly two out of three pseudorelapses in MS patients are linked to UTIs. You might not even feel sick - just notice your legs are weaker or your bladder is acting up again.
- Fever - Even a mild cold or flu can spike your temperature enough to trigger symptoms. Your bodyâs internal thermostat gets confused, and old nerve damage starts acting up.
- Stress and exhaustion - Physical or emotional stress can throw your nervous system into overload. Lack of sleep, a big work deadline, or family drama can all do it.
- Physical overexertion - Pushing too hard in the gym, walking too far, or even doing too many chores can trigger a flare.
Hereâs the thing: if your symptoms started yesterday after you got a fever, or after you spent the afternoon in the sun, or after you didnât sleep for two nights - itâs probably not a true relapse. Itâs your body saying, âIâm overwhelmed.â
Why Steroids Donât Fix Pseudorelapses
High-dose IV steroids - like methylprednisolone - are the standard treatment for true MS relapses. They work by calming down the immune systemâs attack. But they do nothing for pseudorelapses because thereâs no immune attack to calm. Yet, studies show that 30-40% of people with MS get steroids when they donât need them. Why? Because the symptoms feel identical. Fatigue, numbness, weakness - they all look the same. And many doctors, especially outside MS centers, arenât trained to spot the difference. The cost? Not just money. Steroids can cause:- High blood sugar - especially dangerous if youâre prediabetic
- Insomnia - youâll be wired for days
- Mood swings or even psychosis - rare, but real
- Weakened immunity - making you more vulnerable to infections
One nurse with MS on Reddit shared a story about five patients she saw get IV steroids for UTI-triggered pseudorelapses. One developed steroid-induced psychosis and had to be hospitalized. Thatâs not an outlier. Itâs a system failure.
How to Tell Them Apart - A Simple Checklist
You donât need an MRI to start ruling things out. Hereâs what to do when symptoms return:- Check the clock - Did symptoms last less than 24 hours? If yes, itâs likely a pseudorelapse. True relapses donât vanish overnight.
- Look for triggers - Did you have a fever? A UTI? Were you out in the heat? Were you exhausted? Write it down.
- Test your temperature - If youâre over 37.8°C (100°F), thatâs a red flag for pseudorelapse.
- Do a urine test - Even if you donât feel like you have a UTI, get a dipstick test. Many MS patients have silent infections.
- Try cooling down - Put on a cooling vest, take a cool shower, sit in front of a fan. If your symptoms improve in under an hour, itâs probably Uhthoffâs or heat-related.
- Wait and watch - If symptoms donât improve after 24 hours and no trigger is found, then itâs time to suspect a true relapse.
Keep a symptom diary. Note the date, what you were doing, your temperature, any infections, stress levels, and how long symptoms lasted. This isnât just for you - itâs gold for your neurologist.
When Steroids Might Actually Help
Steroids are helpful - but only when theyâre needed. If your symptoms:- Last more than 48 hours with no clear trigger
- Involve sudden weakness in your legs or arms
- Include trouble walking, bladder control, or coordination
- Are confirmed by new lesions on MRI
- then yes, steroids can speed up recovery. About 70-80% of true relapses improve with treatment. But even then, full recovery is rare. Only about half of people get back to exactly how they were before. Thatâs why early treatment matters - not because steroids cure MS, but because they reduce the damage from the inflammation.
Whoâs Most at Risk for Confusion?
People with longer MS duration - especially over age 55 - are more likely to have pseudorelapses. Why? Because their nervous system is already full of scars. The more damage you have, the more fragile your signals become. A little heat, a little stress, and everything goes haywire. Also, people whoâve had multiple relapses in the past are more likely to misinterpret new symptoms as relapses. Itâs fear talking. But fear leads to unnecessary treatment. Neurologists who specialize in MS get it right 85% of the time. General neurologists? Only 60%. Primary care doctors? Just 45%. Thatâs why itâs so important to see an MS specialist if youâre unsure.
Whatâs New in Diagnosis?
In 2023, a new tool called the MS-Relapse Assessment Tool (MS-RAT) was validated. It uses three things to give you a score:- How long symptoms lasted
- Your body temperature at the time
- How much your daily function dropped
This tool correctly identifies true relapses 92% of the time. Itâs not perfect, but itâs a game-changer for patients and doctors who donât have MRI access right away.
Telemedicine apps like MS Selfie are also helping. Patients record videos of their movements, speech, and vision. AI compares them to baseline recordings. Early results show 78% accuracy in spotting true relapses from pseudorelapses.
Future research is looking at blood tests - like neurofilament light chain levels - to detect actual nerve damage. If this works, we might one day have a simple blood test to prove whether your body is having a new attack or just overheating.
Real Stories, Real Mistakes
One woman on MyMSTeam wrote: âI had leg weakness during a heatwave. My GP gave me steroids. I spent three days in bed, dizzy and anxious. My neurologist said, âYou had Uhthoffâs. Just cool down.â I felt like an idiot - but I was just lucky I had a good neurologist.â Another shared: âI had a UTI and didnât know it. My legs gave out. ER thought it was a relapse. They gave me steroids. I got a yeast infection, couldnât sleep, and felt like I was losing my mind. Turned out I just needed antibiotics.â These arenât rare cases. Theyâre common.What You Can Do Today
- Know your triggers - Write them down. Heat? Stress? Infections? Avoid them when you can. - Carry a thermometer - If you feel off, check your temperature. Over 37.8°C? Rule out infection first. - Keep a symptom diary - Track everything. Itâs your best tool. - Ask for a urine test - Before you agree to steroids, insist on ruling out a UTI. - Try cooling - A cold pack on your neck, a fan, a cool bath - if it helps fast, itâs not a relapse. - See an MS specialist - Not just any neurologist. Someone who sees MS patients every day.MS is unpredictable. But you donât have to be confused about your symptoms. The difference between a relapse and a pseudorelapse isnât just medical - itâs life-changing. One leads to treatment. The other leads to rest, recovery, and avoiding unnecessary risks.
You know your body better than anyone. Trust your instincts - but back them up with facts. Because sometimes, the thing that feels like a relapse is just your body asking for a break.
2 Comments
jeremy carroll
man i thought i was the only one who got wiped out after a hot shower đ¤Śââď¸ turned out it was just uhthoffâs. no steroids needed, just a fan and some ice water. life changer.
Jocelyn Lachapelle
this is the kind of info every ms patient needs to hear before they walk into the ER and get pumped full of steroids. thank you for writing this. so many of us are just scared and guessing