I'm kind of a old-newbie. In Dec 2014 JCV antibodies in my blood had rise from approximately 65 to 133. I decided to have a LP as soon as I found out. The LP was shipped to Mayo to be done. The results were returned as POSITVE for PML in January 2015, but Mayo does not give CNS counts - just positive or negative. I was then immediately admitted to the hospital. I had MRI's, a port inserted in my neck area (for plasmapheresis), 1 treatment of plasmapheresis, and another LP. This time the test went to a lab in California and returned with at count of 133 JCV antibodies in my CNS - another POSITVE result. Within five days of my release from the hospital, which happened to be the day I had the port removed from my neck. I developed a fever of 103.7, extreme shaking, teeth chattering and even with the fever, I was always cold no matter how many blankets were piled on top of me. The diagnosis after numerous tests was that I had developed sepsis. which they believe resulted from the removal of the port from my neck. I was released on Jan 31 2015.
I returned to my neurologist, who wanted me to now have additional MRIs and another LP done. The MRI looked fairly good, meaning I had only one new small lesion. My neuro consulted with a neuro with more experience in Tysabri associated PML. I then went to a consultation with him. He agreed the MRIs looked good. The LP test had come back with a result of less than 50 JCV antibodies in my CNS which is listed as a NEGATIVE result for PML. The conclusions the neurologists drew was that my immune system had revved up and destroyed the JCV in my CNS. But they weren't sure, so for the next 6 weeks I had an MRI of my brain done once a week. Apparently when you have PML it will show up extremely quickly on a MRI. So for comparison purposes, I had the weekly MRIs. Conclusion from these MRIs was that my brain had not undergone an significant changes. YEAH!!! I am NEGATIVE for PML! What am amazing ending! Or so I thought ...
But then in October my neurologist wanted to send one more test of my blood to the lab in California just to close out this episode. This month I received the results by EMAIL - my JCV antibody count in my blood was now up to 167. I had been told previously by the neurologist that this virus antibody could no longer replicate because of the destruction done by the sepsis. When the count of 167 came back I called my neurologist with questions. She called me back so we could discuss a plan. I have none of the symptoms of PML, but we decided I should go for another LP, which will be done next week. In a week to ten days I will receive the results from that LP. But for now I just sit here worrying and waiting. I have asked the question of how it could go from POSITIVE to NEGATIVE and back to POSITIVE with no explanation from the doctor.
And so I am hoping and praying someone out there can help me try to figure this out. I know the vast majority of us aren't neurologists or physicians, but I know there are a lot of you out there with tons of knowledge. I am hoping someone out can give me some sort of an explanation as to how this could possible happen. Any info would be greatly appreciated. I think my neuro owes me some kind of explanation, but we all know there are times that just doesn't happen. I would even take 'I don't know' for an answer. I would at least understand that.
Thanks to all who take the time to read this long - long - long post. I don't know how I could explain with less words. Thanks & God Bless all of You.
I returned to my neurologist, who wanted me to now have additional MRIs and another LP done. The MRI looked fairly good, meaning I had only one new small lesion. My neuro consulted with a neuro with more experience in Tysabri associated PML. I then went to a consultation with him. He agreed the MRIs looked good. The LP test had come back with a result of less than 50 JCV antibodies in my CNS which is listed as a NEGATIVE result for PML. The conclusions the neurologists drew was that my immune system had revved up and destroyed the JCV in my CNS. But they weren't sure, so for the next 6 weeks I had an MRI of my brain done once a week. Apparently when you have PML it will show up extremely quickly on a MRI. So for comparison purposes, I had the weekly MRIs. Conclusion from these MRIs was that my brain had not undergone an significant changes. YEAH!!! I am NEGATIVE for PML! What am amazing ending! Or so I thought ...
But then in October my neurologist wanted to send one more test of my blood to the lab in California just to close out this episode. This month I received the results by EMAIL - my JCV antibody count in my blood was now up to 167. I had been told previously by the neurologist that this virus antibody could no longer replicate because of the destruction done by the sepsis. When the count of 167 came back I called my neurologist with questions. She called me back so we could discuss a plan. I have none of the symptoms of PML, but we decided I should go for another LP, which will be done next week. In a week to ten days I will receive the results from that LP. But for now I just sit here worrying and waiting. I have asked the question of how it could go from POSITIVE to NEGATIVE and back to POSITIVE with no explanation from the doctor.
And so I am hoping and praying someone out there can help me try to figure this out. I know the vast majority of us aren't neurologists or physicians, but I know there are a lot of you out there with tons of knowledge. I am hoping someone out can give me some sort of an explanation as to how this could possible happen. Any info would be greatly appreciated. I think my neuro owes me some kind of explanation, but we all know there are times that just doesn't happen. I would even take 'I don't know' for an answer. I would at least understand that.
Thanks to all who take the time to read this long - long - long post. I don't know how I could explain with less words. Thanks & God Bless all of You.
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