So I have always done an LP (Lumbar Puncture/Spinal Tap) to check if I am positive for the JC virus which can cause PML (Progressive Multifocal Leukoencephalopathy), a possibly fatal brain disease, in MS patients on Tysabri.
This new clinic I am going to in Colorado does not do that, they do the ELISA test, a simple blood test, it’s bare minimum, what the Touch program requires. They ran this test my first day there and the results came back yesterday; POSITIVE. So apparently, I am now JC positive which means I am more likely to develop PML. Now many people become JC positive while on Tysabri but STAY on Tysabri because there are many other risk factors in developing PML (here is a list from the MS society);
“1) Longer time on treatment with Tysabri – especially over two years
2)Prior treatment with an immunosuppressant medication (e.g., mitoxantrone, azathioprine, methotrexate, cyclophosphamide, or mycophenolate mofetil)
3)The presence of anti-JCV antibodies. Patients who are anti-JCV antibody positive have a higher risk for developing PML.”
So clearly being JC Positive does not mean I WILL develop PML, it just means I am a little more likely. My Neurologist in SoCal told me not to let anyone take me off Tysabri even if I turn out to be JC positive because my disease (even while on Tysabri) is so aggressive it is barely under control. This new clinic called me telling me I need to discontinue Tysabri and come in to choose a new therapy. If I do that, I will crash really hard (rebound effect) in about 4 months; I will have the worst relapse of my life. This is a well known (but little talked about) effect of stopping Tysabri when it has done well for you and you have been on it for a while.
I am not stopping Tysabri but somethings tells me these people will not want to keep me on it. Even if I can convince them to, I want, no, NEED someone who will monitor me monthly like my Neurologist is SoCal to watch out for early signs of PML. So I am most likely going to have to find a new neurologist out here already. Oh, how I missed “the hunt” – NOT! I wish I could have lifted my clinic in SoCal off the ground and moved them here to Colorado with me. I TRUSTED them all, and now I am back to neurologists with a God complex who try to lie through their teeth to me because their ego is forcing them to hide the fact that they don’t know something… I know when people are lying to me, I can see it in their face, hear it in their voice, and doctors are no exception.
I am planning on flying back to SoCal just to see my neurologist out there, get an LP, and see what my CSF (cerebral spinal fluid) says about my JC virus status and need be, I will fly out there once a month to continue treatment under my SoCal neuro until I find someone out here that I trust.
So I was super stressed yesterday over this but now that I have had time to sleep on it and relax a bit, I am not as stressed. This situation is coming into focus and I am starting to see it rationally rather than emotionally so I am really not all that worried anymore. Just another bump in the road, a delay to my final destination (well, as far as my foreseeable future is concerned).
Oh, and let’s look at the bright side, I will now have lots more to write about haha!