Solumedrol 2023

5 days after getting my MRI I was at the doctors office with my husband. I cried as soon as the doctor and nurse practitioner walked in.  They found an active (ring?) lesion and told me they had an available seat in the IV room to start steroid treatment. 3 days of 1000mg of Solumedrol was what they had prescribed to bring down the active lesion and hopefully help with my symptoms. I continued to cry.

I cried because I'm so fucking frustrated with my treatments not working. I cried because I was scared of the steroids. I cried because I now have to research new meds and decide what I want to do next. I cried because I still haven't even told my family what I was going through. I cried because I didn't know what to say to anyone. 

The first day of steroids took an hour and a half to infuse. My last steroid treatment 7 years ago was in pill form, this was definitely much easier. Except the side effects were still there. It didn't take long for the metallic taste to show up. I felt like I had a bit more energy that afternoon, even popped back in at work and sat through a few meetings.  The NP warned me that I wouldn't sleep and to make sure I was prepared, she sent me home with Ambien and I made sure to take it that night and the next few nights. Day two of steroids went a bit quicker and I went straight home to sleep, I was exhausted. Day three was just about the same. And that was it. The steroids were done. Days four, five, and six were horrible. I had body aches as if I got kicked by a horse. I could barely catch my breath and I felt so ill from being full of fluids (I quickly gained 13lbs in two days just from fluid retention).

We're at day 8, I think my energy is finally getting back to normal, the aches are still there (in my rib cage) and my legs feel like I have sandbags attached to them.

I went back to my post from the last time I took steroids and I wrote that it was absolute hell at that time, but I was so happy to have been able to take the steroids. I have faith that I'll get to that point again. Adapt and overcome.

Healthcare.

Whenever I tell American's that I'm from Canada they all comment on how amazing Canada is and they all want to live there. The free healthcare must be *wonderful*.

Well, I'm here to tell you the differences in healthcare I've noticed just with my MS team in Canada and in the US.

Canada 

When I had a relapse in 2016, the MS clinic saw me a week after I called them, did a super quick neurological assessment, assumed I was having a relapse and sent me home with the worlds largest amount of steroids. MRI to be done in 6 months (as it was already booked for that time). No true follow up to see how the treatment was going.

USA

When I started noticing things weren't getting better last week, the MS clinic saw me the day after I called them. The nurse practitioner sat and listened to all of my concerns, did a neurological assessment, UTI test, then sent me for blood work, an in depth urine culture and I booked an MRI for a week later. They want to make sure what's really happening before they even talk about steroids. I have even been messaging with the Nurse Practitioner to update her on how I've been feeling.

Now everyone is correct, the health care is free in Canada, and I had insurance so my medications were always almost fully covered.  I  also have insurance here in the US, but it doesn't cover quite as much right away. before the end of my plan year, I will likely have to pay $2400 worth of deductibles out of pocket (not sure how much an MRI is, but I might hit my deductible by the end of next week haha), and once that is paid then I should be fully covered.

Another thing to note, my neurologist from Canada moved to another province and they haven't replaced her yet so I actually didn't even have a neurologist anymore. So who would I have called last week?? I'd probably have to wait quite a few months until getting an appointment at a new office.

Basically what I've decided is time is money and I'd rather spend the money and be taken care of quicker. The fact that I was able to book an MRI for next week still baffles me (my mom had a referral for an MRI made in May and she just heard back that her MRI is booked for next year, in February, and in a city 45 min away from her).

I will try to update this as soon as I get my MRI results and discuss the next plan of attack.

(PS there are like 4 Target's within 7 minutes of my house, the US is just so much better.)

It's been a minute...

 I had a post drafted for 2021 that I never finished, so let's do a 2021/2022/2023 quick recap:

2021

• the world is completely back to normal! lol jk
• finished the my first year of Mavenclad - I had the worst back aches, depression, loss of appetite and the worse nausea - the lockdown definitely didn't help, but I was back to "normal" a little over a month later
• monthly bloodwork started (and is still a thing to this day)
• got a promotion at work!
• lost my fur baby - I'm still so heartbroken
• sold my condo & moved back with my parents
• MRI - NO NEW LESIONS!! this meant the crappy feeling was worth it, the meds were working!

2022

• Mavenclad year 2 - week 1 I felt a bit more invincible and didn't take it easy - side effects kicked my butt and I smartened up for week 2 - nauseous, tired, & sore for a month or so after finishing
• borders finally opened!
• got to travel all across Canada - as far West as BC and East to New Brunswick for work
• my best friend asked me to marry him
• my third nephew was born
• MRI - new lesions. ugh
• neuro suggested to do a 3rd year of Mavenclad

2023

• Mavenclad whooped my butt again, but lived through it and was back to normalish a month later
• had two absolutely perfect bridal showers (one in Canada, one in the US)
• transferred my job to the US
• moved to the US
• married the man of my dreams
• honeymooned in the Dominican
• traveled to some pretty cool places for work
• enjoyed a relaxing and yet super busy summer

This brings me to now - September 2023. I think I'm having a relapse. My right thigh started feeling "weird", did a UTI test which showed signs of an infection so I took antibiotic.  A week later, no changes for the better, just for the worst. Both legs started feeling weird, bottom of my feet were tingly, and my ribcage feels so, SO tight. I had just found a MS team here in the US about a month ago so I gave them a call last week when things got really bad (my legs were so restless one night that I just broke down crying and didn't sleep). The MS team suggested to do a few tests before jumping the gun for steroids. To be continued....

Mavenclad!

I should have known that switching DMD's wasn't going to be quick or easy - remember my Aubagio washout and relapse before Tecfidera?  This wasn't any different.

Thankfully there wasn't a washout period but there was a bit of work I needed to do before starting my new medication.  Blood work needed to confirm that my vaccinations were up to date - which I found out that I was not immune to chicken pox! In order to get that vaccine I needed to stop Tecfidera for 1 week and I couldn't start Mavenclad for 6 weeks after the vaccination.  That meant I'd be without any DMD for 7 weeks, which stressed the heck out of me since I had a huge relapse was between DMDs.

During this time off I decided that I should try to control things that trigger my MS so I picked up the Overcoming MS book. I felt that diet was the easiest thing for me to control so I stuck to it for that time! No meat, no dairy, limited fish, plenty of fruits and veggies!

The 7 weeks flew by and I was due to start Mavenclad! I decided to take them after lunch so I could get through the side effects while hanging out on the couch. The first week for me was 8 pills over 5 days.  The first day I was SO nervous to start, I was nauseous before even taking anything.  I finally mustered up the courage to wash my hands and take the first two pills. Easy peasy.  Maybe 30-45 minutes later the side effects kicked in. I just felt unwell. Almost like the beginning of getting a cold.  Drained, headache, sea sick, just a general feeling of blah.  You can't take anything within 3 hours of your treatment so I just set a timer and decided to wait it out.  Saltine crackers and ginger ale were my saviour! By the time the 3 hour timer went off I didn't feel the need to take any Gravol or tylenol.

Days 2-3 were very similar. Day 4 & 5 I just needed to take 1 pill each and the side effects didn't seem as bad.  During the first week I also found I had some really weird, vivid dreams, backaches and headaches that continued on and off.  Plenty of water, an odd Motrin helped this.

And that was it! Week one was done!  I felt great! Until a day or two later, I felt SO nauseous after eating lunch and I tried everything ginger - tea, ale, chews (highly recommend!).  Eventually I discovered that taking a ginger gravol 30 minutes before eating helped.  The next couple of weeks were fine! The odd day I'd get hit with the fatigue stick or nausea but nothing that I couldn't handle.

The 4 weeks between the first pills to the next round of pills came before I knew it and I was at it again! This time it was only 7 pills over 5 days.  Day one went SO well.  I felt completely fine after that I thought I did something wrong! Until dinner time came. Bam! The nausea was back! The days went by quickly, each day came with new symptoms.  A few days after my last pill I had a decent amount of pain and anxiety, yesterday I had no appetite and the horrible MS hug.  But those symptoms pass and I've learned to listen to my body.

Reminder: take it easy.  The days will get better.  It'll all be worth it <3 

2021

Well here we are, it's 2021.  

I turned 33 yesterday.  

The pandemic is in it's second wave and we're in another lockdown with restrictions and closures.  

The US politics are a mess, there were riots today.  

I just finished a new MS therapy!

Let's rewind to last September.  I called the MRI department to make sure my November MRI was still booked (medical appointments were being cancelled or rescheduled due to Covid) and they actually had a cancellation the next night.  The MRI was quick and I finally got some information about my results from my family doctor - new lesions. Again. That's new lesions on every MRI for the last 3-4 years. UGH.  I later called my MS Neuro team and went to see them a few weeks later.

New lesions meant Tecfidera was not working. Which we suspected last year...

Rebif/Injectables - failed.

Aubagio - failed.

Tecfidera. - failed.

It was decided that the first line medications weren't doing what we wanted them to so we had to step it up to a second line. I was given two choices and a few weeks to make my decision.

1 - Tysabri - monthly infusions for the rest of my life, unless I become JCV positive as it increased a risk of PML.

2 - Mavenclad - 2 treatment courses over a 2 year period that is shown to show less disease progression for 4 years.

After multiple pros/cons lists, talks with friends and family, and plenty of research, I finally decided on Mavenclad.  Stay tuned for my Mavenclad journey!

covid

These are truly unprecedented times.  The world is going through something we never could have imagined. 

In March of 2020, the World Health Organization declared Covid-19, the novel Coronavirus, to be a pandemic.  Canadians and people worldwide are asked to stay home, wash their hands and social distance (staying at least 6 feet apart from other people).  It's been 5 weeks since I last worked - wait, no - I was on a temporary leave of absence from work for almost 3 months.  Everyone was told to stay home to flatten the curve and slow the spread. Everything was closed except essential services.

Over the first few weeks I was scared. I have MS and I take immunomodulating medications and that would put me more at risk? The fear changed to denial, next depression and lastly acceptance - there was nothing I more I could do...

I stayed home.  I watched a lot of TV. My days were scheduled around what was airing - Good Morning America, Live with Kelly and Ryan, Ellen, Dr. Oz, Detroit news, Toronto news, local news - all of the news. In between those shows I watched every episode the 90 day fiancé franchise had out.  I also started and finished many different series' on Netflix. To keep occupied I would work out, go for walks through the cemetery, work on puzzles, played video games, cooked, coloured, read, worked on crafts, drank a lot of coffee, and facetimed friends and family.

I didn't even step into a store for the first two months. I ordered groceries from Walmart and did curb side pick up. As soon as I got home I wiped down EVERY SINGLE THING with a lysol wipe (*lysol wipes were impossible to buy, along with hand sanitizer and face masks).  The grocery bags went into quarantine and I didn't touch them for a few days.  If I had to take my garbage out, I would put a plastic bag on my hand to open the door and chute and immediately washed my hands after throwing it away. I wanted to make sure I wasn't bringing the virus home through things I touched.

My first real outing was to Shoppers Drug Mart. I had to go to the post office. I remember how stressed I was that day...my glasses were foggy, I was hyperventilating and struggling to breathe. People weren't following the arrows and I was trying to hard to not get close to them. I avoided touching anything that I wasn't going to buy. I remember walking out and ripping my mask off in my car, sanitized my hands and took a huge deep breath. I survived it.

We're almost 6 months into the pandemic now. Masks are mandatory wherever you go. You need to sanitize as soon as you walk into a building. Outdoor gatherings are preferred.

This is our new normal. This might be our new normal for a while.

2020

It'l be exactly a year that I had my last relapse.  And today it's been exactly a year that I finally accepted the fact that it was a relapse.  I started to get a weird feeling in my right thumb which led to a numbness in my entire right hand.  The numbness got so bad that I couldn't hold a cup, fork, toothbrush or even a pen, which was even harder because I'm right handed!  With the numbness came a pain/discomfort in my right shoulder has been there on an off which is likely from straining the use out of my right hand.

This all started shortly after getting back at the gym with a trainer so I was convinced it was just an injury.  I tried seeing a chiropractor, massage therapist, physio therapist and my MS clinic.  Everyone diagnosed it differently - pinched nerve, sprain, muscle tear, MS relapse.  Given that there were so many options, I chose pinched nerve and had an EMG...which proved that wasn't the correct diagnosis. I even recently had an ultrasound which also confirmed nothing was wrong with my shoulder. 

Typically when I have a relapse, things go back to normal-ish, this time it didn't.  My hand has a constant buzz/fuzzy feeling and some days the strength is weaker.  My penmanship is almost back to normal, I can hold chopsticks again! As with every other relapse, I've learned to adapt and overcome.  I know if I overuse my hand - cleaning, writing, working out - I will pay for it but I learned to accept it and know it'll get a bit better.

My next MRI is booked for November so we'll see what that shows and what the next treatment course may be.