Dear Nina....

Dear Nina, if you notice any problems with your legs, please call your neuro asap.  I promise, if it didn't get better after a few days, it probably means something is wrong. You know that you have no problems walking around a Target or in the parking lot without the need of a shopping cart.  That wasn't normal.

But hey, guess we get to remind you about the steroids now.

Because the legs have been bothersome for a few weeks (and essentially the worst they've been, especially when walking to the bathroom was such a struggle), it didn't seem like such a shock when the Nurse Practitioner said the word "steroids" to you.

Day one: new found energy, like move furniture and do some fancy stretches in the middle of the living room energy.

Day two: slowing down, looking forward to your next dose of steroids, hoping for the same burst of energy.

Day three: realize the energy didn't come again, get a little more rage-y and tired.

Day four: super rage rolls in, you're so uncomfortable because you haven't peed in 6 hours, and your legs are still bothering you.

Day five: here's the day where you'll feel like someone pushed you down a spiral staircase, and then beat you with a pinata stick, just to make sure you were down.  Muscles hurt that haven't hurt before, legs are still super heavy, and the fatigue is out of this world. With the time change, you almost went to bed at 7pm, but forced yourself to stay up until 9.  You won't sleep though, because you'll have the urge to pee shortly after you do fall asleep. every 40 minutes.

Day six: exhaustion. It took almost all day just to wake up. Muscles still hurt, your head feels like it might implode, and your legs are still so fricken heavy.

Ocrevus

So the last week of January was my first dose of Ocrevus. The week before, I spent hours packing my bag for my day at the IV clinic. I packed all of the snacks, a lunch, a water bottle, Nintendo switch, iPad with movies/shows, noise canceling headphones, a book, battery pack, phone charger....lo and behold, I didn't need 90% of the items in that bag.

So the day came, and when you show up they require some loading medication and it starts by giving me two Tylenol pills, an injection of a Benadryl and then an injection of 125 mg of solumedrol. These are to prevent any weird symptoms from happening or side effects. I noticed I was feeling a little off within 15 minutes, almost like I was high from the Benadryl. It also made me really sleepy right away. Half an hour after getting all of those pre meds, we started with my half bag of medication.

I arrived at 8:00 a.m. and left around 12:30. In that time I listened to one podcast, and watched two shows on Netflix that I had downloaded to my iPad. Going forward, I know I only need to bring my noise canceling headphones, the iPad, a warmer blanket, snacks, and a water bottle.

I definitely didn't feel as crappy as I did after my last medication, Mavenclad. I was mostly tired and had a crazy headache in the afternoon, but a Motrin was able to stave that away. I also took a Motrin just before bed to prevent any other weird side effects. I did have a bit of uncomfortable bloat and crash from the steroids a day or two later, bit it wasn't too bad.

Fast forward two weeks and we did this all again. Same pre meds, less packed bag, same headache and crash, but now I don't have to do this again for another 6 months.

New meds, who dis?

 And here we are, back to the drawing board.

Tysabri, Ocrevus, Briumvi, Kesimpta - the four options the doctor gave me to research.

Tysabri - monthly infusions, have been out for a long time, lots of people take it, this is what my last neuro suggested 3 years ago and again last year

Ocrevus - 2 infusions a year, has been out for a few years, lots of people take this one, my last neuro never suggested it (not sure if that was because it was when Covid was hot and heavy and there was a lot of unknowns with covid and ocrevus at that time)

Briumvi - 2 infusions a year, newer, tolerated a bit better than Ocrevus, never heard of it before

Kesimpta - monthly self injections, has been out for a few years, lots of people take it

I thought I wanted Kesimpta. I did injections before, I sure could do it again if I had to. But then I researched Tysabri, talked to the nurse, read a lot of positive posts from people, and made a final decision that this is what I'd go with....until this morning, when I read that I was JCV positive - which increases my risk of PML on Tysabri. Guess that's not an option anymore. Now what? Kesimpta still sounded fine, I did injections before. But I also failed injections before. Do I really want to do that again?? No, definitely not. The doctor made it sound like Briumvi is very similar to Ocrevus but people tolerated it better. But my research showed that it wasn't the best for family planning. Ocrevus? 2 infusions a year. Lots of people take it. Many people have gotten pregnant while on Ocrevus treatment. I think I made my decision?

I see my medical team again in three weeks and I'll tell them I decided to go with Ocrevus. Let's see how this goes!

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