Infusion day! A once a month field trip to the hospital!
Many people have been asking about my disease and my treatment, so I’m going to throw it out there…
I am blessed that I am in the 85% of MS patients that have RRMS (relapsing remitting) For those of you with the Progressive form causing debilitating symptoms, I’m truly sorry.
After a year on Copaxone (an oldie) my brain scans were getting worse (more and more lesions) and I was having more symptoms. So my doc convinced me to go for the “big guns” and fight it with everything we could. I am not a medication girl, so it was a tough sell!
Well, I have been on Tysabri for about 3 years now. Aside from the $22,000/month price tag, and the possibility of getting a deadly brain virus, I am doing great on this med!🙏🏻 Exactly three years ago, I had dozens of lesions and one that was so big they thought it was a tumor on my Pons. My last MRI in September not only showed no new lesions, but it was difficult to find the large one on my Pons. Now they don’t even want another MRI until next year!
I am doing well. The med hasn’t caused any bad symptoms (that I’m aware of) and I’m praying that my neurologist will say I can get off all meds and “take my chances” with this disease by the time I’m 50! One can hope…💪🏻 Thank you to all who have reached out and who have been curious about my journey.
This disease needs a cure! So many people suffer with Multiple Sclerosis and it’s devastating affects on their bodies and brains. Here’s to the future!