I have an appointment to examine me for probable lymph node biopsy; all of my lymph nodes are swollen.
It's my understanding that with the lymph node biopsy, we are also testing for the JC Virus. Does anybody know whether or not this method can detect this virus as suredly as a lumbar puncture ... or is a lumbar puncture the most effective way to put this to rest?
Two neurologists are giving me the runaround about their opinions, one says I don't have PML ... neither has tested me for the JC Virus, so how can they know?! It looks to me, and my primary, that JC Virus & PML are certainly a possiblility ... because this can come in at any time when a patient in immunocompromised for such a long time (years, in my case). There is/are always other diseases and conditions that underly PML ... of which remain unidentified to date, to why would they rule it out having never looked when it can be so devastating?
It can take up to 11 months, I understand, for the JC virus to "incubate" and finally become PML that can then be detected when a patient has all these new developments and "phenomena" that point to PML as a possibility, however remote. Even if they feel the possibility is unlikely, wouldn't you think they would make sure and test for the JC Virus?
Both neurologists have been downright mean about it, and one went so far as to send a letter to my primary saying I don't have PML (this is what a member of his staff called and told me, and further ... mockingly, told me I don't have PML). Hence, I asked her how he can know if he never did the test and it wasn't ruled out?! (Amongst other questions pertaining to incubation time, underlying conditions and so forth.) That's when the conversation ended and she said I would have to ask the doctor all those questions. Why was any letter necessary? Just to belittle or insult my primary?!
They are being so secretive, I do believe they want my primary ... and her direction to potentially find out what my diagnosis is out of the picture and "out of their way." Won't happen!! Guess they should communicate with their patient properly!!
So it sounds as though they have now, in addition, insulted my primary care provider!!! Based on ...... ??? What they can't possibly know without testing!
I'm going to the appointment for the lymph nodes, and the biopsy if that's the case. After that, I quit!!!
Whatever it is, just let it do whatever it's going to do; I will keep physicians only for personal comfort to get pain relief meds and so forth. no straight answers ... no more "cash cow" visits from this patient!! They need to say it, no more vague medical terms that are meaningless and without explanation on their part.
They can just look at this mess later when I croak and tell my family, I'm so disgusted I don't even care what I have anymore. I'm done. Thanks to my primary and the setting up of appointments concerning the lymph nodes, I suspect we will get part of the answer(s) ... if not all.