Category Archives: Lemtrada

I’m Back!

Wow! It’s been so long since I’ve written anything to post on my blog, I don’t know where to start. I think it’s best to give you a few updates and leave some more detailed stories to share soon. I’ve wanted to write, but I had some “restrictions” limiting what I could write about. But now I’m back, and looking forward to spending more time here.

I’m sure it comes as no surprise that my bladder is still pretty high on my “invisible symptoms that suck” list. I’ve continued to have Botox injections into my bladder every three months to try and help with my retention issues. Unfortunately, I need to have both my urethra and bladder dilated (stretched) with each procedure, so I have to go under anesthesia and come home with a foley catheter each time. It does seem to be helping, but I continue to have a hard time peeing almost daily. I’m sure that’s due to my MS brain continuing to short-circuit when it comes to sending the correct signals to my bladder. The good news to this ever-present problem is that I’ve had the same urologist forever–and he’s the best!

For reasons unknown, but coincidentally after my second round of Lemtrada, I’ve lost my appetite and too much weight. Things just taste different Continue reading

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ROUND TWO

“He who is not courageous enough to take risks will accomplish nothing in life.”

~Muhammad Ali

It’s hard to believe it’s been a year since I began my journey with Lemtrada. Tomorrow (Monday) I step back into the ring once again, and quite honestly, I’m not as positive as I’d like to be, but hopefully more prepared. They say the benefits of this therapy outweigh the risks, but I sure wish I felt more confident going into the second round (ding-ding-ding!).

Sadly, my body is not as strong as it was a year ago. Lemtrada has really taken it’s toll, and I don’t feel as good physically, mentally or emotionally this time around. I was hoping my body would be stronger and my symptoms would be less severe, but unfortunately that’s not the case. The spasticity in my legs has gotten worse, and my overactive bladder issues are still a real pain in the ass (literally, since the implant in my butt cheek isn’t really doing it’s job). After hearing from many neurologists and fellow patients, I now understand that some people sail through this treatment and some people don’t. Unfortunately, I haven’t been sailing much.

For example, I’ve been preaching to patients the importance of hydrating days before their treatment to help minimize the side-effects of the Continue reading