Tag Archives: Relapse

My brain still isn’t playing nice

It has been a little over a month since I got my Cleveland Clinic stem cells infusion and have been doing relatively well. My 1 month follow up was on Oct 31 st. I have felt that my walking was a bit better but my spasms have been progressively getting worse. I wasn’t going to try to say whether the stem cells were helping yet or not because I know that it can take a while for things to start healing.

I got a phone call from my research team at Cleveland Clinic yesterday asking me how I was feeling. I mentioned that my spasms were pretty bad but that overall everything seemed status quo (I didn’t mention the funky eye issue or the clumsy hand problem I had the day before, because to me those are very minor transient symptoms in my view). Anyway, they told me that my latest MRI showed new lesions and they needed to see me ASAP for a relapse assessment.

So, here I am today at the Mellen Center. My neuro let me know that I have several active lesions, one of which is on the left side of my brain. After assessment it was obvious that I had some clumsiness of my right side (which is new for me) and a bit of visual field loss on the left side of my vision. The decision was made to put me on IV steroids starting today to nip this in the bud.

My neuro said that this is about the time that they see the stem cells starting working. So, it is quite possible that I would be a lot worse off symptomatically right now if it weren’t for the stem cells. Nobody really knows.

I am just bummed that I am having yet another relapse, albeit a mild one, and am about to receive my 13th steroid infusion since Jan 2010. It’s so disheartening because I have millions of stem cells circulating in my body but I am still not able to stop the MonSter from rearing it’s ugly head 🙁

Back on Gilenya… again

I’m so incredibly tired and sleepy tonight. I started back on my Gilenya today and am wondering if it’s making me more sleepy.

I have been off of it for the past 10 days. I had developed a bad cough, and they weren’t sure if it was a side-effect of the Gilenya or a remnant cough from my illness. The cough finally went away over this past week, and now I am back on the med.

Hopefully, the cough stays away, else I will have to go off Gilenya permanently.
Back at Christmas time I was off of it for 4 days because I was sick and then went back on until this latest break.