MS Walk

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MS. Dena

We are walking in support of Dena

 

Written on December 5, 2018 Dena Herback

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!

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