Neurologist Appointment today

April 29, 2008 at 9:48 pm

Hi folks
Just thought I’d report back on the results of my meeting today with the neurologist. As background, I had written a report suggesting measurement of anti-MAG to define treatment with Rituxan for IgM MGUS.
On the positive side, the neurologist congratulated me on a paper well written and logical. But, she still feels that there is no correlation between antibody levels and improvement/deterioration of neurological symptoms. Nevertheless, I was given the option of paying for anti-MAG tests myself. At a couple hundred bucks a test, I declined for the time being. (what a wimp!! if I had paid, and got the results I could possibly have proved my theory but more importantly I would have supported my convictions. Now that I think of it, I was a total wimp!)
So, they did the normal tests, walking on toes, walking on heels, push feet up, push feet down, etc. Then another VDT and an EMG. Results unknown. But the strange thing today was that there was a big difference between the VDT on my left foot from that on my right foot. They used to be identical. My feeling is that the left foot is improving…maybe the damage is symetrical, but regrowth and repair is asymetrical.
Surprisingly also, I was able to walk on my heels. I could not do that before starting in January 2007. So that is a big improvement.
Basically it seems that motor nerves are improving generally, and possibly sensory nerves although not equally or symetrically.
I will have two more Rituxan treatments – one this Thursday and one in early July. Then my next appointment with the neurologist will be in September.
One other thing is that I read my charts while the doctors were out of the room. My anti-MAG level was measured as 51,000 back in October 2007 compared to normal of 1500. (this confirms the claim at the time that my level was 30 times that of normal).
Norb…I noticed in a previous post you made that your level was 12.1. Do you suppose that mine, on the same scale as yours, would show as 51.0? Or is there a different unit of measurement?
Well that’s the summary of events from today.
Where to from here?????
I don’t know what I should study anymore now. Maybe it is best to just bash on…keep taking the Rituxan and trying to get in shape. The GBS/CIDP hike near Toronto is coming up on May 25, so that will be a good challenge.

Norb, I saw the photos of your new vehicle. Wow…what a great looking car! But surely you will be selling it in a year or so when you no longer need it. Keep up the recovery and enjoy the new car!!


PS. There was another neurologist at the clinic today who told me about a simple strength measuring device that a patient designed with pullies and ropes. It was designed to replace the hospital test used by staff which depended on the size and strength of the attendant measuring the patient and was too variable and inconsistent. With the pulley, rope and weight device, results were consistent and progress was quantifiable. That’s what I had set out to prove today with my paper. Maybe I need to go back and develop/find more proof. Tomorrow. Bonsoir.