Well, none of the doctors had the guts to tell me themselves so they dumped this task on my primary care provider. At least we have the answer so I, and my family, can rest in peace and not worry when illnesses or conditions pop up in the family tree in the future.
I have PML, and they selfishly wasted a month of the balance of my life by not telling me, knowing full well of my loss of function and necessity for hospice care and/or nursing home or similar.
Cause = JC Virus (could have come from one of many common childhood conditions; chickenpox, mumps, measles, staph infection, flu bugs ... and as I got older ... bronchitis, pneumonia, flu strep ... we can never know. But at least I have closure now and can begin making plans for what I am facing and tie up all the loose ends for care and get my affairs in order. Activated, most probably, upon administration of Copaxone injections and corticosteroids that followed ... when they 'thought' I had MS but failed to test for the JC Virus prior to treating me. Also, during that time, I was under extreme emotional stress (divorce proceedings) so I was quite depleted overall. All scripts since have also been wrong and have done nothing but worsen my condition; so now, I am on the right scripts and treatment plan to make the remainder of my life as comfortable and pain-free as possible.
Symptoms began in 1996, but the condition was never found; however, it was confirmed that whatever it was, it was not fatal. Sadly, it may have been treatable or even curable. However, upon the misdiagnosis and treatment of MS with the Copaxone, corticosteroids, and perhaps even all that emotional stress ... everything changed. That was in 2005.
I asked why I am still alive, if the JC Virus was activated way back in 2005, and it was explained to me that although it was activated ... it takes time for it to "evolve" or "manifest" or "mature" to the point of PML. The fatality rate is based upon the diagnosis ... so although a patient may have PML, until the progression is far enough along to diagnose ... it goes undetected. So the fatality rate, or life longetivity timeline, is based on when the diagnosis of PML is confirmed.
So my advice, for anyone that is thought to have Multiple Sclerosis or possible Multiple Sclerosis, or atypical Multiple Sclerosis (as in my case), make absolutely certain that they have checked you for the JC Virus. If you have it in your system, and they don't find it or know it's there, the treatments for Multiple Sclerosis may prove deadly. I understand this is rare, but it happened to me. Here I am. It is my understanding that 85% of the population carries the JC Virus dormant in their system; in rare cases, it reactivates and manifests into PML. Knowing of the JC Virus, and my case being rare, I may have still taken the Copaxone injections and the corticosteroids. However, I would not have until they confirmed that I have Multiple Sclerosis with absolution. They never really knew, I should not have had the treatments until there was more certainty ... especially with the JC Virus ... of which should have been tested for, and was not. Which was probably the key to the symptoms that started in 1996, to begin with ... or something else viral or something ... treatable, non-fatal ... and perhaps even curable.
It's too late now.
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