Quote:
Originally Posted by mima
I have been diagnosed with anti-mag antibody about 1 year and 1/2 ago after 9 months of dr appt and tests. I went as long as I could With out pain meds but it got to the point that I couldn't stand anymore, felt like I was walking barefoot on hot sharp pebbles, I am currently taking nortriptyline used for nerve pain, it has helped tremendously I can get by day to day, im still limited if I over do it which before this was considered normal for me I am in pain by evening and usually the next day. But I do not think I would be walking with out it. I am being treated with rituxan, I do not know if it is helping or not. My numbers are up and down. Im on maintenance every 2 months, in November they dropped significantly, today they tripled from November. Dont understand. Other then nortriptyline helping the pain I dont feel anybetter. Do not know what future hold or what to expect by the treatment of rituxan long term. I just get told its so rare no text book way of treating it or knowing what causes it :/  |
Hi Mima,
There are a number of us with anti-MAG. I've had it for about 13 years (now 59 years old) and have had both Rituxan and IVIg infusions. I did not benefit from Rituxan unfortunately and am finding IVIg and exercise to keep my core and legs strong to be of most benefit. I have balance problems, hand tremors, burning feet (if I walk very far), have severe restless legs syndrome. Thankfully, as long as I don't get too warm or walk too far, I don't really have much discomfort. I take Mirapex for restless legs which really helps. I have been seeing a very good neurologist at Virginia Mason in Seattle, WA. Glad to live in a cooler climate! Hope you find that the Rituxan is helpful. Keep in touch and let us know how you are doing.
Blessings,
NancyKay