Polyps, impacted wisdom teeth, bad toenails....gahhh, it seems like more and more stuff falls apart as you keep getting older.

RW, I'm sorry for the tooth pain. That is just no fun.

I had an appointment with my neurologist today. It was supposed to be my #6 infusion check up but I did that with the nurse in Dec. since the doc was overscheduled around the holidays. I was also supposed to have the #8 infusion today but given the viral cold they said no. The neuro agreed with the infusion nurse that there was no harm in waiting 2 more weeks until the cold was completely gone. I still have some cough and congestion. She seemed to think waiting 1 week would be fine too.

I think I told you this before but my neuro has MS and is on Tysabri. I'm not sure yet if I like that my neuro has MS too. But that is a whole other story!

I asked her about the protocol at the Multiple Sclerosis Research Center in New York (which was a spinal tap, blood serum test, and MRI every 6 months to watch for PML). She thought it might be on the aggressive side, having to get a spinal tap every 6 months. She had discussed with other neuros that 1) the spinal tap headache seemed to be worse if you were already on Tysabri 2) the hole to reach the spinal fluid was more likely not to close up as quickly, thereby letting more fluid keep leaking, because of the immunosuppression from Tysabri. Anyhow, my clinic already tests my blood every 3 months for the JC virus. She told me if I wanted to have a spinal tap at the 12 or 15 month mark I could to check for JCV for peace of mind about PML. I guess I can think on that one.

Also, one of the researchers at my MS clinic just published a piece in the Archives of Neurology suggesting the possibility of taking a "holiday" from Tysabri. He discovered there were fewer immune cells called CD4 T cells in the brain of people on Tysabri and perhaps this increased the risk for PML. By taking a holiday one could allow those immune cells to build up again. My neuro said there was debate amongst the doctors in the clinic about this suggestion. Her concern was that if you take a Tysabri holiday for any reason your risk for developing antibodies goes up if you try to go back on the drug. And then the drug becomes useless.

I'm still pretty new to this and sometimes I find these visits to be quite frustrating because there are never any "right" or "definitive" answers to the long detailed questions I ask. Sometimes I wish the neuro could say "Okay, do this, do that, make this decision, and then everything will turn out this way...." I guess it doesn't work like that, right?