Quote:
Originally Posted by Jappy
Saw the neuro today. Our first meeting since moving to Kentucky.
I liked him with our first handshake.
He was very nice and had me go all the way back to when I was
first dx. That was in 1984. Asked a lot I mean a lot of questions.
Then he tested me with the usual tests that are given on the first
visit. My balance and walking was awful. Joking he asked what was I
drinking. I didn't do very good on his memory testing.
I am going to have an MRI of brain
MRI of spine
EVP Visual test
Neuropsych testing
My last MRI was in 2007. I was able to get a copy of it from the
hospital I had it done in before I moved.
After all tests are done, we will talk about results and where I go
from there.
He also asked if I would sign up for a clinical research that they are
doing. It is for the JC Virus. I never heard of it. I was told it is a research
study to analysis and determine precisely where the JCvirus is hiding. It does
effect the immune systerm. It is a benign virus, since it produces no
symptoms. But the virus can be reactivated in the setting of decreased immune function.
He asked me to participate because I have never taken any of the
MS drugs. So far it has been with people that have taken one or the other
of the drugs. 
Took 3 blood vials and urine specimen. I will only have to do it this
one time. 
Now to wait till all the tests are taken and then see where it
leads. 
Jappy |
Hiya Jappy!
Glad to hear you found a neuro with a personality! Liking your doc is a definite plus! He sounds very thorough and I think a set of up to date test results is a very good thing to have!
I want to thank you for agreeing to be in the JCV research!
The JC virus is found in 80% of the population. It is generally contained in the kidneys and causes no problems to the general population. It can be activated in people with suppressed immune systems, including people who are on chemo and people with AIDS. The current thinking is that the immune system, when healthy, keeps it in check.
The problems with JCV and MS came to light during the original trials for Tysabri, when Tysabri was given in combination with Avonex. it has since been determined that Tysabri should NOT be given in concert with immunosuppressing drugs (i.e.- methotrexate, avonex, azathioprine, etc) It is also seen in people using other drugs (rituximab comes to mind right now)
That is why we folks on Tysabri have to be in the TOUCH program, so that we are monitored and to ensure that the docs understand that it is NOT to be given in combination, to ensure that there aren't a lot of cases of PML (progressive multifocal leucoencephalopathy) which is caused when the JC virus crosses the blood-brain barrier.
Please let us know more about your participation in this study when you get more information. I am interested in what they are doing and where it is going from here!