The Ups and Downs of Day to Day MS Symptoms

On the left a current pic of me rocking my cane. The right when I started this journey with all the injection site reactions that went with it.

I was diagnosed at 20 years old with RRMS.  At first I just had fatigue, some tingling, and numbness that came with a relapse and went away.  On a hot day when I was walking I would feel some tingling, sometimes I would get a little fatigued, but everything still felt mostly normal. Then at 22 I had a major relapse that made me walk like a drunk at a university where drinking was against the rules.  A week later I had horrible back spasms that were very violent and almost seizure like- though I was conscious and very aware that my body was contorting into painfully unnatural positions.

I took a medical withdrawal from my current classes. I felt guilty, like I had given up. I had work yet to finish from my previous semester abroad in India.  On top of that I had an MRI that showed no active lesions and no new lesions. The neurologist wasn’t really sure why my symptoms were worsening so severely. The previous year I took a stress management class and learned about psychosomatic symptoms and how severe and strange they could be.  I thought maybe I was just trying to avoid the work I was stressed about finishing. Was I doing this all to myself? I was so confused and I felt so much misplaced guilt.

I didn’t understand that symptoms can go up and down, stick around, go away and come back- even between relapses.  A couple of weeks after the relapse I was shopping with my Mom and Aunt and I left my cane in the car by accident.  When we were in the store I had a moment where I said in amazement- “I am walking without my cane!” My Aunt, a wonderful and religious woman, said it was a miracle!  She proceeded to call my other wonderful aunt and tell her all about how Itsy (that’s me- another nickname variation of Little Bits) was walking without her cane and it is a miracle! I sat in the car with a fake smile on my face during that conversation.  The thing was, I didn’t feel cured and I didn’t feel like it was gone. I couldn’t explain it, but I had such a sinking feeling. Then I self chastised myself and part of me believed that I didn’t want to get better.

The back spasms and gait problems continued for years. I had already been diagnosed with RRMS but no one had explanations for my symptoms.  I felt completely abnormal and questioned again if it was all “in my head.” I would walk with a cane, but I didn’t need it all the time; I needed it in case.  But I was a girl in my early 20s walking with a cane! I was so self-conscious. Did the people that watched me think I was faking? Why could I walk perfectly normally without a cane at times and need it so desperately or not be able to walk at all at other times?

My current neurologist has confirmed with me that I was indeed having a relapse. Relapses in symptoms do not have to have coinciding inflammation on an MRI.  With my last bad relapse I also had no active inflammation or new lesions on my MRI, but I had new numbness, walking problems, MS Hug, and worsening spasticity.  In fact I have never had active inflammation on any of my MRIs- in 15 years! But I do have more lesions than on my first MRI, so the disease has been active. All this information, as well as talking to others with MS, has convinced me that I am not crazy; I am not doing this all to myself.

I am a mom of two little ones.  Something about having my mom and mother-in-law hold my legs while I pushed out my first baby, with a male doctor staring down my birth canal took away all my shame.  I no longer care if anyone thinks I’m faking it. My last relapse happened at a time when there was so much community support. I found MS Buddy, I found cool people doing vlogs like Damian Washington, and I found support in an online community on Instagram.

Day to Day ups and downs are normal.  They don’t have to get us down because there will be times when we will be up. I deal with my MS symptoms every day- some days they are worse some days they are a little better.  Some mornings they are bad, some evenings they are not so bad and vice versa. This disease may be going in a general downward spiral, but our spirits do not have to. New medications are coming out every year, immunotherapies are being studied as well as regenerative medicines.  I hope and pray for a cure for MS within our lifetimes but in the meantime we can manage our symptoms. There are Disease Modifying Therapies to slow down this disease and hopefully halt the progression. Tomorrow may be brighter, so let’s just worry about getting through today.

One thought on “The Ups and Downs of Day to Day MS Symptoms

  1. Thanks bits. I loved reading this one. It helped me understand things. I’ve never thought you were faking but it’s good to know more about how lesions and the disease work. It’s even better to understand how you think about it.

    Like

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