Quote:
Originally Posted by LauraGTimes
Hi,
I'm new to all this stuff, bear with me :-).
I am 25 years old and just over the past few months have noticed some numbness and tingling that's gotten progressively worse. I saw a neurologist after my MD suggested the symptoms warrented a workup. The neurologist saw some clinical mostly sensory problems, and ordered a brain MRI which was wnl, bloodwork where all was normal except my anti MAG was elevated to 3386 (999 was cutoff for abnormal). I had my EMG/NCV which this week which showed motor nerves ok but my feet and hands all had sensory symmetric "low and slow" velocities. I am still waiting for an official "diagnosis", and next week am having a lumbar punture and MRI of spine/thorax. The neurologist seems surpised that the bloodwork was positive for anti-MAG, said he ordered it without expecting anything in that direction, the GM1 was negative. Since my initial "occasional numbness and tingling" I am now experiencing (For the past few days) Burning sensation that stays (as opposed to coming and going) and is from my kneecaps down on both legs. My palms also burn almost constantly. In the past few weeks I've gone downhill fast. I didn't realize there was a difference with CIDP and anti-MAG polyneuropathy. Are they closely related? How were others diagnosed?
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Hey Laura, My name is Jon and I live in New Zealand. I read your story with interest and as you can see here you are not alone.
I, like you have been recently diagoned as CIDP anti-mag (in March 2009).
At first I was incorrectly diagnosed as just CIDP. I started on prendisone and azathioprene tablets, then had 25 intragam infusions, then went to fortnightly 1000mg methyl predisilone pulsed steriod infusions and I still struggled. In October 2009 a blood test surfaced 5 months after it was done showing my anti-mag levels were at 9,000 (in April). Another blood test was done immediatly and showed my anti-mag was now at a staggering 55,000.
I was immediatly funded and put onto 4 Rituximab infusions which finnished in November 09 when I also had some hyperbaric oxygen therapy. I had no problems with Rituximab what so ever. Some days I even went to the gym in the afternoon following my morning treatment! Its now February 2010 and Im awating the results from my Rituxmab chemo which is another blood test in mid February. I hope it has some effect.
How are you feeling and what progress are you making? Are you on facebook? Im easy to find under Jon Anda in New Zealand. I wish you well. Regards. Jon