How I Know if I'm Having a Relapse

By Jenny Angus

1 min read

Many people living with multiple sclerosis (MS) have asked themselves at one point or another, "Am I having a relapse?" Jenny has experienced a number of relapses throughout her aggressive MS journey. In this video, she discusses the following topics related to relapses:

The frustration of lack of MRI evidence and medical gaslighting
Her personal relapse test system and different steroid experiences
The importance of knowing your symptoms and advocating for yourself
Her specific relapse symptoms, including severe itching and bladder and bowel issues
A system for tracking symptom severity over time

Remember to always consult your doctor before making any changes to your treatment regimen!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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kimberlybthatsme Member
Jenny! This video was so amazing to watch! OH MY GOSH! I'm always second guessing if I'm having a relapse (even us MS'ers with PPMS do have ups and downs but not exactly like RRMS) Since I have comorbidities I'm not sure if I'm having an MS "moment" or if it's something else. I LOVE how you hit on the MRI and nothing showing up even when you are having a relapse of flair! (one of my fav docs said to me once that our medical tests and bloodwork have not caught up to our diseases...that was mind blowing to hear that from a doctor!) I've had a clear (well 1 small lesion) since 2018. I do have a great Neurologist that believes me but doesn't know what to do with me (not willing to go on O due to my body having severe reactions to meds plus I hate that my immune system will be compromised, but mostly the not breathing thing when I go into anaphylaxis is what I hate the most). October hit me hard and I finally called her and she wanted me to go to the ER, I hate hospitals (the not believing your pain, the chance of getting sick(er), the wait times, the judgmental looks, the cost). Plus I didn't think they would know what to do with an MS'er walking into the ER saying they are having a flair, but she assured me they do...I didn't go, I sucked it up and cried a lot. I had a TN attack so bad that I did go to the dentist who referred me to another dentist who wants to do surgery. Oh the fun of MS and the different comorbidities that go along with it. Any how, I love, love, loved the video and am so glad to hear that I'm not the only one who thinks like this. I will have to try your way of testing to see if it is a flair or not. Thanks for shinning a light on this and for the great info. ((HUGS)) to you and hoping you are feeling better!
1. Jenny Angus Contributor
 <inline-mention username="kimberlybthatsme" user-id="3958502"/> Hi Kimberly, thanks so much for watching and for your insightful and supportive comments back! You have a lot to deal with, with the comorbidities as well. I understand the fear and feeling of going into anaphylaxis during an infusion. It's terrifying. This disease is really tough, but it sounds like you're a very strong person being able to handle all your other issues on top of MS 😉 I am so glad this video resonated with you and hope that in future you will have confidence in your gut instinct and go in to the ER when you need treatment. My warmest thoughts go out to you and thank you again for listening. Take care, Jenny (Team Member)
aprilinparis Member
Jenny- Thank you so much for your video with your story/tips on dealing with your flares and the medical community. I got emotional watching it bc I feel like this every time I go in and try to explain the new problems I am experiencing and have to listen to results from my MRIs saying everything is stable “no new lesions”. Unfortunately, drs don’t seem to trust me with the fact that I would be able to discern when I would be able and to need steroids for help stopping inflammation. Every time I approach with a symptom of something I am told “that’s not related to MS”, or “MS doesn’t result in those kind of symptoms”. Like it’s the same for everyone-ha! The one thing I think I’ve learned about this disease is that symptoms show up differently at different times for different people. I definitely present in the not normal range for sure..I prefer heat to cold for one- winter is a killer for me! My last flare I couldn’t stand straight up, could hardly walk- excruciating back pain radiating up and down spine. Dealt for 4 days back and forth w my neuro who kept telling me it wasn’t my MS…that MS doesn’t cause back pain! I was already on Gabapentin and he wanted me to up my dosing on it (I kept saying I couldn’t bc when I tried before it turned my fingers purple..hmm he didn’t remember that..let’s up the dose) finally my chiropractor said get to the ER where the neuro there did a check on me said it was absolutely based on signs a flare- admittance for the 5 day course of heavy duty IV steroids. By the end of day 1 surprise! I could stand up straight and the pain was completely gone!!! But MRIs ordered showed zero new lesions!!!!! Loved the idea of the little notebook! I have never thought to do that so I have an account! My support person really isn’t a support..so I need to take accountability I think it’s time- 7 years in at this point 3rd medication. Kesimpta now. Everyone around me still in denial. I tend to live there too, but I need to leave them in denial and move forward. Keep doing what you’re doing. I felt so blessed by what I watched today! Thanks again! Good health and blessings to you! April
1. Jenny Angus Contributor
 <inline-mention username="aprilinparis" user-id="3946112"/> Hi April! Thank you so much for listening and for your feedback; I really appreciate it. I’m so sorry that you’ve been gaslit. That episode of severe, agonizing pain during the cold spell sounds hideous. When in your gut you knew it was a relapse, but it took you going to the ER before they would listen to you. I empathize so much with you. Thank you, I’m glad you like the idea of the little notebook. It’s been my saving grace and I hope it is yours moving forward. It is hard for others sometimes to accept our disease. I think it is that way because if they accept it, then they have to deal with it too. I think people are afraid, and don’t know what to do. Acceptance on our end, is often a work in progress for the diagnosis, and as our bodies change. Hang in there, sounds like you have a good sense of self, and f

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