Results of visit to Neurologist today

February 19, 2008 at 8:32 pm

Hi everyone
Well, no matter how much you plan something and map it out in your head beforehand, it never seems to go like that in the end, does it?
The meeting started off with questions about my improvement since Rituxan. I said that I had not noticed any improvement, but that things have not deteriorated either.
Then they decided to do another EMG. As a reminder, my only other EMG was last May, and I had Rituxan in December. The discovery from this EMG and from vibration testing was that things had deteriorated. In fact the vibration test levels on my feet were double the values of last May. So I tried to explain that there could very well have been significant deterioration prior to the Rituxan and that this would likely exceed any regrowth or repair of nerves, which is a slow process.
Then they did strength tests and I gave it all I could, to which they said that I had improved in strength!! Wow.
Then the neurologist came back into the room and we talked about the coverage for Rituxan and what I wanted. I said that Rituxan looks like my best chance for a cure based on all my readings and that I am therefore in favour of more Rituxan, even if I have to pay for it with my pension savings.
So…here is the interesting part…I will get a 375 mg maintenance infusion of Rituxan once per month for the next three months with monthly follow-up visits to monitor results.

With regard to the list of Questions, they took a copy and said that they would get back to me.

One final note…I have been encouraged to write to my member of parliament to pressure our medical system to provide coverage for Rituxan in the treatment of anti-MAG MGUS. In my opinion, once we have breached the dike in one spot, the rest should start to cave in…private insurance, medicare, etc.

So…more Rituxan…more chance to knock down those B-cells.

I asked about avoiding travel due to the immuno-suppression, and the answer was that I should continue to do what I normally do, like avoid crowded places, get plenty of rest, etc. I found this answer to be a bit naive given that an impaired immune system is an invitation for bacterial infection. But then, it was not the neurologist who said this…it was the technician.