How I Can Tell I'm Having a Relapse
Last updated: July 2023
Folks, to be completely honest, I can’t think of a single relapse that I could identify as being one. My hat goes off to any of you who can. You are lots more on the ball than I am. I mean, it’s not like there’s a lack of information on the internet describing relapse symptoms. There are boatloads of health sites that are full of facts about all things MS. But for some weird reason, reading a description of a possible relapse presentation is not at all the same as experiencing one. I hope you’ll stay with me as I try to hammer out why this is.
Numbness, weakness, and spasticity indicated my first attack
I guess I can forgive myself for my ignorance during the very first attack. Those symptoms are what made me seek a doctor’s opinion and hope they could tell me what in tarnation was going on. My symptoms were numbness and weakness on my left side that caused a spastic hip so tight that I had to swing my weak left leg forward, resulting in a limp and occasional knee-buckle. The weakness and numbness in my left hand made it impossible to use a knife to cut my food. Dizziness and fatigue pulled me into a chair most days. An accompanying severe upper respiratory virus caused me to choke on mucus no medication would dry up, and caused my airway to spasm shut.
Was it cervical myelopathy?
The neuro who hospitalized and tested me said that if the weakness and numbness symptoms ever return, I should call and make an appointment. I took this literally, thinking that I had to have these exact symptoms happen again to see the neurologist. The MRIs showed no brain lesions and two lesions in the cervical spine, which they explained as the likely cause of my mobility issues. I was diagnosed with cervical myelopathy. After two months the symptoms completely resolved except for some mild foot drop.
The second attack
The second attack was a bit different. Five years had passed without incident. I’d pretty much convinced myself that the attack was a one-time glitch caused by the respiratory virus and would never recur. But at work one morning, I started typing and discovered that my left arm and hand were numb and weak. My legs were fine. I didn’t think it was MS, probably because I didn’t want it to be. I saw a new primary care doc and described my left hand issues and she suspected carpal tunnel or tendonitis.
I had to wait to qualify for insurance to see a neurologist
I mentioned my history and she suggested I see the neuro. But I’d just started a new job and wouldn’t have insurance coverage for another 60 days. Now I was fatigued and easily winded, but I had to work through my symptoms to qualify for insurance and go back to the neuro. I asked for three days off, rested up, and pushed through. It took nearly a year of retesting and waiting, but I was finally diagnosed with MS.
Leg stiffness and blurry vision
Four years later, my husband and I drove to Florida for a vacation. On the way down, my legs felt stiff but I thought it was from sitting in the car for so long. After we arrived, we went to an arboretum. I could barely walk and felt like I needed a wheelchair. Later, I had to drive alone at night to our hotel room and my vision was suddenly so blurry that I could barely read the street signs.
More new symptoms
Back home I experienced more symptoms: urinary urgency and frequency, and what I now know was Uhthoff’s Phenomenon, or pseudo exacerbation, practically passing out in the heat. I started using a cane. Months passed before seeing the neuro again, and I described everything that had happened. He told me I was having a relapse. Once again, I was oblivious. This time the symptoms didn’t remit.
Another relapse 2 years later
Two years later, I suddenly became very tired and sleepy. In the car I came to a stoplight and couldn’t remember if I was supposed to wait until it turned green or if it was like a stop sign and I could start driving again after coming to a stop. After a couple of days of bone weariness and confusion between stop signs and stop lights, I thought it was a good idea to see my neuro. I was stumped. These were very strange symptoms. My neuro told me it was a relapse and started me immediately on oral prednisone. I went back to baseline after the very first dose.
My observations about my past relapses
So reading through all the relapse symptoms, a few things pop out:
- Early on I thought I had to have all the same symptoms to make it a relapse.
- Later on I had new symptoms that threw me off. Looking back, the stop sign vs stop light confusion was my first experience with cognitive dysfunction.
- I tended to accept these changes and spent energy adjusting myself to them rather than reporting them to my doc.
Do you know when you're having a relapse?
Do you find any of this relatable? Do you know you’re having a relapse and phone your doctor right away? I would love to hear how you respond to a change in your symptoms, so please do share!
Have any of the following helped to reduce your pain? Select all that apply.