I had my second Neurologist appointment yesterday (18/06) and I was once again nervous, sitting there waiting to hear what he had to say. The waiting room was full and I thought "Great, I should know doctors never run on time." but it really wasn't that long because the other patients didn't need long appointments. It was finally my turn (only 15 minutes from my appointment time) so I went in and sat in the familiar chair opposite him at his desk. He greeted me with a smile and asked how I had been. For some reason, once I was in there I found myself more relaxed then the previous time I spoke to him in his office, maybe thats because I knew what I was up against and wasn't being told what I was the first time around. So I told him I was going pretty good, that my feet weren't numb and the sensations on my torso weren't as bad, my fourth and fifth fingers on my left hand were still numb and my finger tips on all fingers felt strange and that I was still clumsy with my hands and feet and who could forget falling down the stairs at work. I also mentioned to him that I was getting more frequent headaches and had my eyes tested with no change in prescription for my glasses and that the picture I had taken of my eye showed a healthy looking optic nerve. As I was talking to him he was writing notes about what I was saying, which is a little off putting.
He had me walk back to and from the door a few times I was more steady but turning was not smooth and hesitant, maybe because I'm sick of tripping over and that makes me over cautious. I had to stand still in one spot eyes closed and did surprisingly well, as was walking heal to toe - considering I couldn't even do one step heal to toe the first time. Next i'm sitting on the edge of the examination bed touching my nose and his finger and touching my chin to my chest to gauge the pins and needles that occur in my thighs when I do that movement - and it was marginally less then what they had been. I then lying down running my heal up my shin first right side then left side, closing my eyes telling him which way he was moving my toe, up or down and feeling the vibrations of the tuning fork on my feet. That was the end of the physical exam and we were back at his desk.
First he started off with how pleased he was that we decided to start off with the Tysabri treatment because it's starting to show improvements in my symptoms and it's only been 3 treatments. Then he asked if I had any questions, to which i said yes. My questions were:
Are there any vitamins that I shouldn't take while i'm on Tysabri?
"No. There is no harm in taking sensible supplements but I wouldn't go out and starting eating the grass." - Ha ha funny man isn't he?
How often will I need to have the blood test for the JC virus and MRI's?
"Now the frequency of your MRI's is debated on by many specialists. I don't see the need for MRI's unless you show new symptoms or have a positive JC virus blood result and as of the first blood result you are negative. What will we do with the MRI when we get it, we will just look at it like we did your first one. I am very pleased with how you are progressing on the Tysabri and your symptoms are improving so I don't see the need to do another MRI. As for the blood test they will be done every 6 months." - I am pleased that I won't be needing MRI's frequently the less my head has to be invaded the better.
What happens when my husband and I decided to start a family, is there a time frame I should be on the Tysabri before thinking about going off to and starting a family?
"No, there isn't a particular length of time you should be on it but it is working at the moment. As for getting pregnant I have had patients who have fallen pregnant while on Tysabri and have delivered a perfectly healthy baby. However if you were to plan when you would want to start trying to conceive, I would suggest putting you onto a different medication that would be an injectable until you fall pregnant then you could just stop that medication for the duration of the pregnancy and breastfeeding and then resume with the Tysabri. I don't need to see you for another 6 months so have a think about what you want to do and we can talk about it then." - I'm sorry but i can't remember the name of the injectable medication.
So that was the extent of my questions this time around and these questions could possibly be added into my Questions blog. I don't have to see my Neurologist until the 3rd of December which is good unless my symptoms change in which case I would need to see him earlier but fingers crossed thats not the case.