Receiving a diagnosis of multiple sclerosis can be overwhelming for several reasons. One the most overwhelming aspects about this diagnosis comes when you are trying to decide what the right treatment plan is for you. There are many treatments available for MS and the associated symptoms, including prescription and non-prescription options. As is the case in making any major decision, it is important to weigh the benefits and risks of each option so that you can make the decision that best fits your needs. While it is important to heed the advice of your doctor, you also have to make sure his or her recommended treatment plan is right for you.
One of our newly diagnosed community members wrote the following: My first documented relapse happened the day after Christmas in 2013. I woke up paralyzed from the waist down. After a month and half hospital stay, I was finally diagnosed with multiple sclerosis. My neurologist thinks I should start treatment with Tysabri, even though I’m JCV positive. My neurologist is adamant that a more aggressive treatment would help me greater, even though there is a risk of PML. My first infusion is next Tuesday and I’m pretty nervous. I was hoping to hear some encouraging story, from people like me.
Response from Cathy Chester:
I don’t take Tysabri and I’m not a medical person, but are you sure you want to go ahead with the infusion despite being JCV positive? You may want to read this article to provide more information about Tysabri and JCV before making your final decision. If you are not satisfied with your doctor’s response I suggest you seek a second opinion. Please let us know if we can be of any other help, and keep us posted.
Response from Laura Kolaczkowsk:
I am on Tysabri and continue to test JC negative. I do know people who are Tysabri and are JC positive and have decided the benefit outweighs the risk. It is a tough decision and a decision you can and should revisit with your neurologist if you have doubts. One thing that has changed for the JC+ people is the aggressive screening. You can expect MRI’s more often and continuous questioning from the medical staff. There is also a fairly new, but rigorous treatment protocol that has been developed to treat people who develop PML. Your neuro should also explain that to you. Good luck with this decision – it is a tough one that ultimately only you can make. I should have added a friend who has tested JC+ all along, continues with her Tysabri because it is the most efficacious MS drug available to us. She has been on it over 5 years now, with no regrets and no signs of PML.
Tell us more about your experience when you were first diagnosed. What was your first treatment? Is that the same treatment you are on now?