Saw a new neuro yesterday who saw me right on time instead of having to wait up to two hours which is no longer possible. I liked my new neuro ok, she was pushing the Tysabri hard & I did get excited about it, with her saying that some people experience a dramatic improvement on symptoms they've been having, but after talking to the Tysabri company today, I am considerably less excited.
23% of all folks ever gone on it have developed PML which is either fatal or leaves you severely disabled? On top of this risk, you could also developed acute liver failure requiring a transplant?
And I have serious concerns about the fact that I have already had a previous serious nearly fatal brain infection and that was neuro Lyme's which could be lying dormant waiting to wake up along with the John Cunningham virus or JC virus associated with PML, the encephalopathy tha is usually fatal or leaves you seriously disabled if you happen to survive.
Since this was my first visit with this neuro, I really didn't even have time to get into the fact that there may be other risk factors for me involved including the fact that this PML is a type of Polyoma Virus which is associated with birds and I have 4 parrots all of whom have a borna virus which affects parrots like MS, they are being treated for it and are well but this is still something in my environment. Plus I have dogs, cats, and bunnies! And they are mostly all pretty old. So you can be sure I probably have the JC virus since I was told 50% of everyone has it and you can bet that it probably comes from animal contact.
I was unable to discuss this with her because it was the first appointment and she was trying to become familiar with my medical history, which is already complex, and there just isn't enough time for everything else. Plus there's the whole neurological history of problems in my fathers side of the family, which has often made me doubt that I am really even have MS. However I did have a spinal tap over 10 years ago which showed oligoclonal bands and neuro Lyme's, but I also have this family thing - nonspecific demyelinating neuropathy - which both my father and his brother have and their father have.
So this all just makes me think that Tysabri might be a terrible mistake for me to take? But then her saying about how some people have a dramatic improvement was just so tempting, so tempting, like something I've been fantasizing about. But I sure as hell don't want to die as a result, not like that.
Please anyone if you have thoughts about this, let me know, especially if you have animals as a big part of your life and know that it is a valid concern to be considering cross species things like this. So many people out there don't have pets or think that the ones who do are crazy to even consider them along with oneself, as opposed to just eliminating the animal from the equation. To me that would be like death itself.
I also got Zoloft for my depression which is now coming full force.
23% of all folks ever gone on it have developed PML which is either fatal or leaves you severely disabled? On top of this risk, you could also developed acute liver failure requiring a transplant?
And I have serious concerns about the fact that I have already had a previous serious nearly fatal brain infection and that was neuro Lyme's which could be lying dormant waiting to wake up along with the John Cunningham virus or JC virus associated with PML, the encephalopathy tha is usually fatal or leaves you seriously disabled if you happen to survive.
Since this was my first visit with this neuro, I really didn't even have time to get into the fact that there may be other risk factors for me involved including the fact that this PML is a type of Polyoma Virus which is associated with birds and I have 4 parrots all of whom have a borna virus which affects parrots like MS, they are being treated for it and are well but this is still something in my environment. Plus I have dogs, cats, and bunnies! And they are mostly all pretty old. So you can be sure I probably have the JC virus since I was told 50% of everyone has it and you can bet that it probably comes from animal contact.
I was unable to discuss this with her because it was the first appointment and she was trying to become familiar with my medical history, which is already complex, and there just isn't enough time for everything else. Plus there's the whole neurological history of problems in my fathers side of the family, which has often made me doubt that I am really even have MS. However I did have a spinal tap over 10 years ago which showed oligoclonal bands and neuro Lyme's, but I also have this family thing - nonspecific demyelinating neuropathy - which both my father and his brother have and their father have.
So this all just makes me think that Tysabri might be a terrible mistake for me to take? But then her saying about how some people have a dramatic improvement was just so tempting, so tempting, like something I've been fantasizing about. But I sure as hell don't want to die as a result, not like that.
Please anyone if you have thoughts about this, let me know, especially if you have animals as a big part of your life and know that it is a valid concern to be considering cross species things like this. So many people out there don't have pets or think that the ones who do are crazy to even consider them along with oneself, as opposed to just eliminating the animal from the equation. To me that would be like death itself.
I also got Zoloft for my depression which is now coming full force.
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