Relationship IgM and anti-MAG

March 3, 2009 at 10:15 am

[QUOTE=norb] I don’t think there is a direct relationship between overall IgM levels and antiMAG IgM. [/QUOTE]

Unfortunately Norb, you could be right. In the trials by Susanne Renaud, all patients saw the IgM go down but not all saw the anti-MAG go down. I guess I have been ignoring some of the facts in trying to find a quantitative way to determine an effective maintenance program.

Damn this stuff is frustrating:
– There is no relationship between anti-MAG and IGM levels
– My neurologist says that the level of anti-MAG should not be used to gauge the efficacy of Rituxan treatments
– The last EMG test I had showed no changes yet I know that my neuropathy had improved (balance improved, reflexes, etc)
– I can’t tell whether my feet are getting more numb or less numb because…ironically…they are numb.

It seems like we are pioneers in this field…no maps, no compass…just some general knowledge from qualitative studies funded by stakeholders.

Sorry to sound down on this subject. From both engineering and business, I’ve always been taught to MEASURE, MEASURE, MEASURE. But with this disease, we don’t really know what to measure.

If Rituxan cost the same as aspirin, the decision would be a lot easier.

Maybe what we need to do is develop a do-it-yourself home testing system to measure the numbness we experience. The Dyck scoring system for neuropathy is useful for large populations, but it does not help for day-to-day monitoring on a personal level.

Let me work on that!!