Today I got the test results for my JC Virus Test...it was positive. So I've only had 1 Tysabri infusion and I know that going into the Tysabri treatment I already am more supseptible to PML. This leaves me with many more questions regarding my future MS Treatment. I'm open to opinions & suggestions.
Also, I've been having what I am calling "episodes" of Pain/Numbness which always starts on the side of my head and goes down my neck/shoulder and left arm/hand until I can't move my left arm/hand and it's constant pins/needles and pain for up to 1 hour. I've increased my Neurontin and I'm trying to rest more.
I'm also experiencing buzzing from even just walking say 1/2 mile. The buzzing could be anywhere in my body. Legs, Torso etc.
My Neuro wants me to do IVSM again (I just had it in Feb) and I'm not sure if I should since I have the JC Virus + Steroids + Tysabri = No immune system! And shouldn't we limit the amount and how often we receive IVSM? Do I not do it and deal with the symptoms and hope Tysabri helps them subside? I welcome opinions here as well...
I hope everyone else is doing well.
5 comments:
Hey Lanette---
I don't come to the blogs much any more because of school, but I'm dropping by to send you my best hopes and vibes. I don't know why some people have tougher courses and I have no answers for you, but I'm nearby if you just want to vent.
Lots of love,
Jen
MS causes an overactive immune response which is why the drugs aim to modulate, correct the immune response. The T drug I cannot comment on because I do not know. The steroids can calm things down and let you heal. Watch your body signs to slow down or rest or cool down. Good luck!
I'd be interested to know where you got your JC Virus test and whether it was thru a spinal tap or simple blood test.
I've been on all 3 of the "first line" medicines - Avonex, Copaxone and now rebif. I'm waiting to get a JC virus test - if it's negative, i'm moving to Tysabri. If it's positive, i'm moving to Gilenya. My (non medical) view is that the first line medicines are the right answer if they work and either Tysabri or Gilenya is right if they don't.
Anyway - food for thought.
- Jeff
Jeff I only had the blood test for the JC Virus. I've had two infusions of Tysabri so far and it's made a big difference in my energy levels and symptoms subsiding already. My neuro has shown me it's safe up to 1 year on Tysabri with the JC Virus and the risk of PML increases each year slightly after that. I'm willing to do it and see where I am in a year. Let me know how your test turns out. Did you have the blood test also?
Lanette-
I just got my results back- positive for JC antibody. I have been on Tysabri for 2 years and it has been wonderful! I was not walking during the summer of 2009 and after steroids started Tysabri and it really helped with my fatigue so I could do more and get moving! So now I am left with the choice of staying on Tysabri with PML risk, taking a drug vacation- tysabri every other month, or start of Gilenya (oral med). Here is where it is rock - me - hard place! there is no info on patients going from Tysabri to Gilenya...
So I'm still thinking! Did you decide to stay on Tysabri?
take care,
Karin
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