After my last neurologist appointment 10 months ago, I had every intention of waiting things out and allowing more feedback to come in regarding Covid vaccine side effects experienced by MS patients, and, in particular, MS patients who had previously had HSCT. BUT, last month, here in Pennsylvania, the number of new positive cases doubled in a week’s time and 99% of those cases were seen in unvaccinated patients… just like me.
You see, I’ve always been more concerned about the vaccine side effects than Covid itself. May sound naive on my part, but my fear was legit & came from a bad experience I had two years after transplant when I had a tetanus/diphtheria booster vaccine that wiped out a large % of the gains I had seen in my foot drop post-HSCT. I never did regain all of it, so that was always weighing on my mind. How much more do I want to lose due to a vaccination, or do I want to die from a deadly virus?🤔 So, I masked up, and even had an antibody test to make sure I hadn’t already had Covid. It was negative, so, other than masking up, I felt like a moving target for Covid.
With an upcoming vacation to the Carolinas coming in September and the colder weather soon to follow, which means a likely increase of infection rates, I knew it was time to make a move. I contacted my neurologist’s office and he gave me the go ahead. His patients have seen minimal reactions, with the second dose usually being the more symptomatic and typically only lasting for a couple of days. Boom! I was on the phone, scheduled and on my way to get the vaccine within 2 hours. It was so easy I was shocked. Completely painless…and free.
Deciding to get a Covid vaccine when you have MS, and/or when you’ve had HSCT, can be very tricky. The “right time” is different for everyone. Much like all the MS-related decisions I’ve had to make over the years, it wasn’t an easy one. But, this was MY right time.
Here’s a breakdown of each of my doses from the notes I took during the process, including side effects:
Day #1 – Dose given at 10:00 a.m.
Arm begins to get sore by late afternoon.
No other symptoms.
Day #2 – Arm is VERY sore and is for 4-5 more days.
I feel extremely tired the entire day. A low-grade fever of 99.9 that was short-lived. Took Tylenol. Lasted a few hours. All I wanted to do was sit, rest and nap. No other symptoms passed day 2 other than sore arm.
Day #1 – Vaccine dose #2 given at 10:30 a.m.
Arm begins to get sore by mid afternoon.
Start to get a little internally shaky, similar to when I’m coming down with an infection.
Day #2 – Woke up to aching spine and neck. Found it difficult to turn my head from left to right without pain. Sacral area very achy and had a raw feeling to the bone. Felt inflamed.
Took two Tylenol. It helped.
Old areas damaged by MS began to tingle and become more numb than usual.
As day 2 progressed, balance began to wane, foot drop ramped up and fatigue set in.
Had overwhelming urge to sit completely still (and I did).
Sat outside in the shade with a fan on all day. It was 91 degrees out (I don’t have the more typical heat intolerance a lot of MSrs do. I have the opposite, so the heat was a welcome comfort to my achy bones.)
By 5 p.m., balance was WAY off.
Stood up from chair and lost all bladder control (never happened before). Seriously?! Didn’t even feel it coming, or the urge to go. Alrighty then, Covid vaccine. I guess I’m gonna have to play along. No turning back now!
Next up, headache. Skull felt inflamed. Starting feeling flush.
Took temperature. Fever of 100.9 (typically 97.1).
Took two Tylenol. All good.
Day #3 – No fever. Balance still off, but improving. Overall tired and sleepy, and maybe a little weak, but I had to babysit my two and a half year old granddaughter and all she cares about is playing toll bridge with my trekking poles (it’s a thing we do). Tired does not compute in her world. So, some internal dialogue of “suck it up, Gigi” got me through the day, but I was definitely not feeling 100. But, overall, symptoms were alleviating. Important note: no bladder disasters since the initial one.
Day #4 – Again, symptoms continue to decrease, and I think I’m just shy of the light at the end of the tunnel.
It’s important to note, that other than the bladder incident, all of these symptoms were ones that have been documented by legit resources and listed as potentials. So, none of it freaked me out and it really is no different than any other time in the past when I’ve been fighting off an infection of some kind. Whether bronchitis or sinusitis or even a cold, I’ve experienced all of the above. Same story different dynamic.
So there’s my testimony of my Covid vaccine (Moderna) experience. As I mentioned, deciding to get this vaccine was not an easy one and it shouldn’t be. I waited a long time to decide. You need to educate yourself, gel on it, and decide what your risk/benefit tolerance is, and move forward.
Much like the MS treatment ghosts of my past, I’ll chalk the experience up to yet another experimental drug/treatment that will keep me healthy and alive. No biggy…kinda.
Peace & love, my friends.