MS Awareness Week!

It’s MS Awareness Week so I thought I’d share an update on Bryan…

Lots of people have been asking how Bryan has been doing since he began taking Lemtrada, a new treatment for MS, in December. Everyone seems a little unsure of what the Lemtrada is supposed to do, so here are a few quick facts:

What does MS do to you?

Doctors are not entirely sure what MS “is” but the leading theory is it’s an auto-immune disease where your immune system attacks your brain and spinal cord leaving scar tissue that interferes with signals coming/going to your body.

What is Lemtrada?

It’s a chemotherapy that was originally developed for people with leukemia and is now being given to people with MS. It wipes out your immune system which forces your body to rebuild it. The hope is that your immune system will rebuild correctly and stop attacking your brain and spinal cord.

Is Lemtrada a cure?

No. There is no cure for MS – and technically there are no treatments for people with progressive MS like Bryan. The only MS treatments available are intended for people with milder forms of the disease. Lemtrada is intended to slow down or even stop the process of getting worse.

The Man.
(Bryan went shaggy for “No Shave November” and stretched it through December and January!)

What’s it going to do for Bryan?

It will be months or possibly years before we know. Lemtrada works best in people who are young, active and have very little scarring on the brain and spinal cord. Some of those patients have healed! The hope is that it will provide some respite for older and/or more progressive patients like Bryan, too, but no one is sure if it will do anything.

This doesn’t sound all that great.

No one says this to us, but several think it, and we understand! So listen, when there are no treatments and you just go month to month and year to year getting worse – or seeing your loved one getting worse – you get freaking jubilant over the possibility that something might help slow this down. Make sense? It’s the best MS treatment yet. It’s worthy of excitement! 🙂

Tell me some good news.

On Bryan’s last MRI before the treatment, some of his scars had shrunk which seems to indicate that the round of Lemtrada he had off-label at the tail end of the clinical trials is working some magic. Will he feel better, too? Time will tell!

Some life experiences are “growth opportunities” to learn virtues such as patience. This is one of them!!! We want Lemtrada to do something while we wait for stem cell therapies to be developed – that’s the next wave.

4 thoughts on “MS Awareness Week!

  1. I’m really interested in hearing about your family’s experience with MS as my mum is a neurologist specialising in MS – I’ve heard the doctor’s side of the story but not the patient’s. Mum is very excited about the new treatments that are becoming available, and I’m so pleased to hear that the treatments are impacting patients already!

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    • Bec,
      Thank you for taking an interest in our experience! I love that your mom is an MS specialist!!! We love our neurologist (Bryan’s neurologist, technically, but I say “our” because MS is not a solo experience).
      I just checked out your travel blog! I lived in Europe as a teenager and again after college/university, then worked in international business with heavy travel for many years. Love love love traveling and hope to do more once the kids are older. The one time we took the kids to Europe, my son barfed on me and everything/everyone nearby the entire way home… I am still not over it. 😉 Ha!!

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  2. Thanks so much for the update. It does help those of us who can’t possibly understand the challenges you both face daily. We are pulling for Bryan and for Lemtrada!

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