Fun with MS

The title of my post is intended to be facetious – just to be clear. Oh, I am just being dramatic. Thankfully, thankfully, thankfully, this year has been pretty uneventful. Bryan has felt crummy this summer, but that’s the ebb and flow of things. The good news is that the FDA has until November to make a final decision on Lemtrada. This is the drug we tried off-label two years ago but haven’t been able to continue because the FDA rejected it. (It was approved by 33 of the other 33 countries who reviewed the trials… ) So if it gets rejected in November, Bryan and I are headed to Canada for treatment. As much as I love Canada, I’d much rather do this here. ***UPDATE*** I found out Canada won’t allow MS patients from the US to come there for Lemtrada so Germany it is!***

Bryan’s neurologist always runs late because he’s a very popular doctor and well known MS Specialist and he gives every patient his full attention. He was 3 hours late for our last appointment! But we’re grateful for all the times he stayed longer with us. Sometimes it’s us. Sometimes it’s you. All the time, it’s worth waiting.

Bryan has begun a monthly steroid infusion in preparation for the Lemtrada (here or Canada). The funny thing is that a home health nurse came by, poked a needle in his arm, handed him infusion bags with steroids, syringes filled with saline and a sheet of instructions for giving himself his own infusions!!! I am not kidding. Bryan and I were clamping down lines and swapping out bags like pros. Who needs a nursing degree when you’ve seen as many episodes of ER and Royal Pains as we have?!?

Seriously, it reminds me of the instructions in a box of at-home hair color.

15 thoughts on “Fun with MS

  1. Good Morning Kim and Bryan,
    Thank you for the update on Bryan’s health. Kim, you are a wonderful inspiration to us all; especially how you are handling Bryan’s illness and maintaining levity through your blog. I am will pray that FDA will approve the drug so you and Bryan do not have to travel north to get the necessary treatments.

    Love ya

    Rhenechia in Texas

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  2. Oh friends, what valiant champions you are! SO thankful you have some good news and hopes of good treatment! I will be praying about the specifics! Much love. Thank you for your zest for life in the face of MS!

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  3. Isn’t it amazing what you can do when you have to? I certainly found that out when I had to undergo surgeries for both breast cancer and lung cancer within three months of each other. Please know that we are available to help should you need anything. Our prayers are with you all.

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  4. The FDA always slows down the progression of drugs approval in the USA. If you have to go to Canada, it is what’s best and you have our full support. You guys have the best attitude! Being a caregiver for your spouse and/or other loved ones always makes you realize that you can deal with needles, blood, barf, etc… And all you do need is a little instruction.
    Fun with MS, with a kick-butt outlook. XO.

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  5. Thanks so much for the update!!! I don’t always ask so as not to overwhelm you/overstep, but I am always thinking about your sweet family and how Bryan is doing. Of course, since we are practically related now, I would be happy to drop by and help with infusions, etc. You can handle the more gross stuff that the kids bring! xxoo Dawn

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    • Haha! Feel free to come play nurse! My brother Steve used to love giving Bryan shots. 🙂

      Don’t ever worry about over-stepping if you have a question or concern! I don’t always have much of an answer but I will try. 🙂

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