From Bad to Worse

I was diagnosed with Crohn's disease in 1974. I got the worst kind right off the bat. Fistula, the whole shebang. I was 17. Fast forward to 2009 and several surgeries and hospitalizations later, I had gone through every drug to manage it they could think of. So the Dr decided to put me on Cimzia. It seemed to calm the disease somewhat. Still had flares and a few hospitalizations, but nothing like before. But I started to notice some odd behaviors.

I noticed more symptoms that had me concerned

Bumping into walls, tripping over nothing, falling, memory issues and headaches. So in April of 2009 when I was visiting my Gastro; I mentioned to the Medical assistant my symptoms and she said 'oh my Lord, you have MS.' And scurried from the room.

A few minutes later the Dr came in and immediately sent me for an MRI and confirmed that I had a brain full of white matter. Apparently, one of the side effects of Cimzia is if you have certain traits, it can cause MS, and it had gone unchecked for 7 years. I was referred immediately to an MS specialist, and the rest is history.

Things kept progressing

It seemed to just be in my brain until this year when they found lesions in my thoracic spine when I complained about walking issues again. I already had left foot drop but it was getting worse. They tried Tysabri, but I became JC Virus positive and the number was approaching unacceptable levels.

So here I am, with failing kidneys from all the drugs I take. My insurance doesn't want to pay for Stelara or Glatiramir Acetate, I have Afib, Pulmonary hypertension, and because of two PE'S in my lungs, I am also on Eliquis for life.

I am grateful that I am still around, but boy it's been one hell of a ride.