One year ago today, I went to my optometrist because my eye was sore and blurry. One year ago today I found out I had optic neuritis. One year ago today the ophthalmologist told me he suspected I had Multiple Sclerosis.
I didn't believe him. Some days I still don't believe him.
I had an MRI on January 25 and got the report on January 30 which confirmed the suspicions. I saw my doctor on February 13 and got referred to my neurologist, who I saw on March 8. I had another MRI on April 25 and started copaxone on April 28.
I had another MRI on October 21, then saw the neurologist again on November 8. My MS is still progressing and the medication isn't working. After a lot of deliberation, talking to professionals and conferring with my family, I'm in the process of starting Tysabri sometime in January to hopefully slow it down.
Today I feel well, I have energy, I slept well. Other days I don't. Some days my legs are numb, other days my hands tremble, and still others I just feel off.
This disease has many faces. I'm forever thankful I don't have to face it alone. And forever thankful for Clayton who always has my back.
I'll be fundraising again for the MS Walk which happens in April. If you want to donate, please let me know. Every dollar gets us closer to figuring this disease out. The medications are expensive (between $14,000-$60,000 per year), so every penny is used. If you want to walk with us, we are happy to have you.
Much love. here's to hoping 2019 is less of a roller coaster than 2018.
December 14, 2018
Today I found out I tested positive for the JC Virus...this means I'm more likely to get PML if I'm taking immunosuppression therapy...more thinking to do. PML or Progressive multifocal leukoencephalopathy is a brain infection, there is no cure. The odds of getting this are small - 1/1000, but they are there and I have to consider this when considering therapy options.
I spoke with the nurse today and will be meeting with the educator on Friday. I will also be speaking with the pharmacist and of course my family before making more decisions on the future of my care.
December 21, 2018
I met with Shirley today, a nurse at the MS Clinic. We discussed care options and I've decided to proceed with Lemtrada therapy. The nurse from the MS One to One program for Lemtrada already called me this afternoon to start that process. I have to have a few more tests and wait for government approval but I should be starting that treatment in late February. I've joined a couple of facebook groups (and asked Clayton to join as well) on Lemtrada for some patient insight. One of them had a poll today asking if people would do it again, there was not a single "no". Part of the Lemtrada treatment is a commitment to monthly blood work for the next 5 years. I suppose that's a good thing as they can catch things much faster if you're being checked that often. Let's hope this one works!
January 1 2019
New Year new....relapse? Just when you think you're doing ok this disease hits you again.
I'm currently on my first steroid therapy to try to calm this down. Vertigo and abnormal eye movement this time. Which means I can't see well enough to drive.
So happy to have a great man who takes amazing care of me and has been driving me where I need to go and patiently waiting while I get treatments. He's the best part of all of this. Also grateful for an awesome work family who tries to accommodate what I need medically and who have also offered to drive me around if needed. Much love for all my family and friends. Hopefully this passes soon.
February 8, 2019
I should be starting Lemtrada at the end of this month. Nervous and hopeful about this. Lemtrada is one of the "big guns". It's not without it's risks but it's very aggressive therapy and has shown a lot of success long term. That said long term is only about 8 years or so, as all of the MS drugs are fairly new. I'll be off work for that week, as the therapy is 8 hours a day for 5 consecutive days.
February 21, 2019
Speed bump alert!
The soonest that the infusion clinic could get me in for Lemtrada was the week of March 11 - but we are moving on March 20 and I don't want to be useless soooo I opted to wait until April. Which means my birthday week (starting April 8) I'll be getting my treatments...not exactly how I wanted to spend my birthday but if it works then YAY!
I was packing and cleaning last weekend and way overdid it (I didn't realize at the time), but on Tuesday I was completely worn out and my body was buzzing, and my fingers were not working well...after a good sleep I'm feeling better. I still have a lot to do but I'll keep trying to pace myself :)
Also, big shout out to all who have donated so far! I'm so grateful for all of you!
March 8 2019
One year ago today I had my first neurologist appointment. I already knew the likely diagnosis so there were no real surprises. I was lucky to be able to have Clayton with me at that first appointment so we could both learn a little bit more about my disease. The staff at the MS Clinic are amazing, and my doctor is a very caring man who took the time with me to explain my disease. He ordered my upper spine MRI to confirm that I also have lesions in my spine. He knew where they'd be without the MRI.
In one month I'm scheduled to begin Lemtrada. This drug is not 100% safe but it has a good chance of stopping my progression. I'm nervous and hopeful.
What a year it's been.
"You have relapsing remitting Multiple Sclerosis".
My saga continues.
I'm scheduled to start lemtrada on April 8. One of the common side effects is thyroid disease, so before my infusion my neurologist set me up with an endocrinologist.
I saw her in January, she had me stop birth control. She had suspicions I had more going on. I saw her February 12 and she sent me for bloodwork and biopsied my thyroid.
On Thursday last week I saw her again. Along with a surgeon. I have hashimoto's disease along with my MS (it's an auto immune condition that affects the thyroid).
Along with that they found atypical cells in my thyroid. Not cancer but could become cancer they said...
So I have to have surgery to have my thyroid removed.
The monkey wrench is that I can't have surgery and lemtrada at the same time because the lemtrada will kill my immune system and I won't heal well from surgery.
So now my three doctors need to talk to figure out a game plan for me.
I'm moving next week, as my condo is too hard on me (stairs and having to walk the dog when I'm not feeling well).
I could sure use a break.
April 4 2019
I was scheduled to start Lemtrada on Monday the 8th. Yesterday at 4:45 my neurologist called and told me that he spoke with my endocrinologist and they want to do the surgery this month. Still don't know when. So he wants to hold off on my MS treatments for now. He also wants me to try Ocrevus instead of Lemtrada due to the side effect profile.
Ocrevus was approved in Canada 6 months ago. It's an infusion given every 6 months. Ongoing. One pro for this treatment is much less time commitment. It's also not as hard on the immune system as Lemtrada. But it's a continuous therapy which is a bummer. Another bummer is the cost is around $64,000 and it's not covered by healthcare just yet because it's so new. So more paperwork and applications to the drug company are needed.
I left a message for the surgeon today to find out when they want to do my surgery. I wish I had some concrete answers so I could plan a little bit better....