Well That Didn't Go As Planned...
Last updated: June 2023
I never imagined that I'd become a patient. I am a psychiatric nursing assistant, trained primarily in brain injury rehab. So when my fingers went numb, my rational mind and agreeing with my doctor, b12 is the obvious proof via bloodwork.
Things escalated quickly
When I wake up feeling odd tightness around my torso and chest, I again rationalize it to be from my workout the day before in the gym or lifting a patient funny. Until I'm at work lifting my favorite patient from the toilet and my chest hurts. It's heavy and tight, and it feels like I'm struggling to breathe. He's safe but I'm on the floor with four nurses poking at me so off to ER I go. My blood pressure is high so I was quickly given an EKG and told I was fine. I was given a prescription for lorazepam and to take the weekend off work. By Sunday, I feel like I can't fold, and I'm scared to go to my family doctor's office. He tells me I need to relax but offered a referral to a neurologist because of the numbness. So I'm told to wait off work until I see a neurologist and then there's an outbreak. Everything is on hold in the medical field. Finally, after waiting nearly 4 months, I get a phone call for an appointment with a neurologist who sends me for an MRI. The MRI comes back very quickly.
The words I will never forget
That phone call, "Margaret, you have MS. I'll refer you to the MS clinic," I'll never forget. Click. Wow, I was shocked, mad, scared, and sad. I had experience with MS. She was bed ridden and not 50, and it scared me that maybe that will be me. I finally get into the MS clinic and was diagnosed with CIS, and told to call if new symptoms appear, etc. All the while, my fingers are numb the numbness has spread up my left arm and part of my chest, my blood pressure now stays low all the time and I'm dizzy and having falls.
The holidays became incredible difficult
Nearly at Christmas, I'm exhausted trying to bake and be a good mom while my body is falling apart. I wake up and notice my feet feel tingly, figure it'll go away by end of the week I'm numb waist down, I call the clinic and wait days for a reply. I then go for a urinalysis to see if it's a UTI, which it isn't and I get my first dose of steroids. The numbness doesn't go away. So now I'm more numb than not and my emotions are everywhere. I've realized I can't wiggle my toes anymore. I see the neurologist at the MS clinic again. Now I am labeled relapse remitting MS. I was offered the different medications I chose Ocrevus and off I go.
Where I am today
Nothing has improved since the 1st day I went to hospital. I don't have the hug constantly but often and my hands are droopy, numb, and tingly. I'm noticing I can't make myself use the facilities as I used to. I received a referral to a urologist and an ultrasound. Let me you, not an appointment I like to think/talk about. After numerous attempts to empty my bladder, I get catheterized by the nurse and I'm told I need to start self cathing 3x a day. I'm not even 40 yet and walking with a cane out of the hospital with a bag of catheters. The feeling of defeat was huge that day. July comes I get my 2 half doses of Ocrevus. I'm not a fan but willing to try it again. My lower back didn't enjoy the infusion and both doses left in me worlds of pain. I know the infusion won't heal me or make it any better and I'm just hoping the pain is worth slowing down disease progression.
Trying to manage my pain
I'm taking Gabapentin three times daily now. The pain in my back and neck is awful and the pain from the peripheral neuropathy is getting worse. I'm taking a med also now for my blood pressure and wearing thigh high stockings for compression. I met with a lovely cardiologist. She explained that physically she doesn't see a concern and thinks it may just be a side effect of medications or having MS that causes my blood pressure to drop similar to POTS.
My first full infusion, the nurse did a fabulous job poking me on the first time and leaving no bruising at all. Needing to have it slowed down a few times as my throat was getting itchy and uncomfortable. I received more Benadryl and fluids. I went home didn't sleep for 2 days because of back pain and headaches. I had another full infusion and still all symptoms present. I developed Lhermitte's sign. Why it's becoming so much worse now. I don't know. I've mentioned it to the MS clinic. I've had this symptom for years and I thought it was from lifting weights wrong as the first time I noticed it I was dead lifting and looking down. I've now decided not to have Ocrevus any longer and thinking of taking a break from DMTs for a while.
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