Jennie's MS Journey

I am still waiting on my test results to see if I can begin earlier. I should get them back Monday or Tuesday. If I am still negative for the JC virus my risk for PML is low enough that the doctors are willing to do the transplant without waiting the full 6 months. This would mean I start next month!

Tysabri is a phenomenal drug for holding off disease, but a scary one because it comes along with a risk of a brain infection that is fatal in most people. The other drawback is when going off the drug (as I currently am), there is a higher risk of progression which some neurologists call the mother of all relapses. I REALLY hate the sounds of that and so I did the dose of Rituxan (and more than my fair share of steroids) to help prevent the “mother “of all relapses, if anything maybe then I just deal with a tiny toddler of all relapses….;)

Some of you have asked me why I didn’t just stay on Tysabri instead of going to this extreme. It’s easy for me to answer that question. First off, I developed new lesions both in my spine and brain while on it so it was an indicator it was possibly slowing, but clearly not stopping damage to the myelin. Secondly, Tysabri’s risk of PML goes up after 2 years to 1 in 1000 especially if JC virus positive. So I looked at it this way, I would take that risk every month for 5-10 years or I could take a similar risk with the transplant one time. Once. The risk is really no greater than the more aggressive infusions if you take the fatality rates of those undergoing HCST for aggressive MS or severe autoimmune disorders. You cannot compare fatality rates of those underging stem cell transplants for cancer. Those are two different beasts. HCST in MS patients is relatively safe and even safer in Chicago with Dr. Richard Burt. I am in good hands.

Another exciting thing about this trial is that it is the only known treatment for MS that seems to completely halt disease progression and also reverse some damage. It is being considered a “cure” for some. Not only that, but once you get your new  re-booted immune system, you typically no longer take any medications. Basically after the recovery I will not have to get treatments every month, no more steroids, no more worrying about the side effects that each one causes. I’m looking forward to taking my life back from this horrible disease. I will be the happiest skinny little bald person you have ever seen.

You can’t change the cards you’re dealt, but you certainly can choose how to play them.