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In April 2013 I put to print the story of Velia De Angelis and me and our story as MS warriors. During the subsequent summer, many changes have occurred for me that yet again connect with Velia.
On April 12 I had 2 MRIs with a third the following week. These included my brain, spine and thoracic area. On May 29, I met with my wonderful neurologist, Dr. Angela Applebee to review the results at great length and discuss next steps. I continued with my regular routine and added a med to help with walking. As summer approached and I begin my routine outside including climbing up and down 2 flights of stairs, planting flowers and eventually swimming. I realized that I didn’t seem to have the stamina and longevity I had a year ago. I worried that MS was moving into the progressive stage.
On August 7 I met with Dr Applebee again to discuss my concerns. She started by saying to me, “let me worry about the MS so you don’t have to”. She assured me that I wasn’t moving into the next stage but that she wanted to try a different medication. She felt the daily injections of Copaxone had done their job for the past 9 years and it was time to try a new med that she felt would help to keep me where I am. She also prescribed physical therapy; which has been very helpful.
The new med is called Tysabri and it is given by infusion once monthly. I am scheduled for my first infusion on September 18, 2013. It has been proven to be very successful for MS patients but does have a high risk of developing a disease called PML which attacks the brain – so MRIs are needed every six months. They are my nemesis but it must be done!!
So I sent Velia the news about Tysabri because I knew that SHE was taking the same med. Once again our lives connected!!! In only her humorous way, she responded to me:
“I love to be infected by positive people, funny people. Your doctor is an angel. I must be honest I did not trust Copaxone drug as a medicine is just fresh water. I used it at the beginning but after one month it was very hard to find a place on my body to do injection. 30 injection that my body did not absorb at all. Full of bruise…was like feeling shot by a gun. Ahhh. Then Rebiff 22 and again Rebiff 44 my body did not affect the injection but MS was running. Now the Tysabri which is more dangerous (the risk of PML) finally I found a balance. The most hard period is just summertime having the heat and work in the kitchen. I think this is a good news for you to know that with Tysabri is gonna be a monthly meeting or appointment. Who cares? I am gonna have my 28th infusion next Wenesday I am ok… I am still alive. Once in the hospital I bring with me the Sun, a great smile and do many cookies to make everyone happy. I know 4 hours but we talk, we listen music and we share life stories. I love you Anna my sister 4ever.”
You have to take a blood test to see if you are positive for the JC virus which can lead to PML. As luck would have it both Velia and I are positive. This accounts for the numerous MRIs. However, the risk is low the first 2 years. After that, it increases. Velia, being the eternal optimist sent this message on September 7: “No worry I am positive like you and now I am having my 28th infusion. Now they have discovered two kinds of positive JC after 24 infusions. Can be dangerous depending by another blood test to send again to Denmark. I have MRI every 2 months.” She continued on Sept 7, “no worry even you positive Tysabri is safe 24 infusions. Then research will go ahead.”
I agree about the research comment – in 2 years I will be 65 (doesn’t seem possible!) and who knows what will be on the horizon at that point. I’ve learned it is best to live day by day, always focusing on what I can do and not what I can’t do. I also have a strong faith that it will work out as it is meant to be. I’ve been fortunate for so long with this insidious disease. It takes a strong support system to keep a positive outlook. And for that I am so grateful for all the friends and family who provide me with love and support. I would be remiss to not mention our greatest assets:
Both Velia and I have loving partners who care for us and help us face the day to day life of dealing with MS. Gianluca and Dan are our strength!