Reply To: How long after onset did you begin to actually lose strength, not just weakness?

April 26, 2015 at 8:13 am

I just thought that I would add my recent experience if it helps or just adds to the confusion. In early Nov. Of 2014 I notice tingling and numbness in both legs, symetrically, over a 3 day spance. I went to the hospital and a Physicians Assistant recommended that I see a nuerologist. After taking near a month to schedule an appointment, he at first thought that I had GBS but since it had been four weeks, although the initial symptoms were acute, had slowed significantly (slowed not stopped). After 21 blood tests, EMG, lumbar puncture and two MRI’s a diagnosis of anti-MAG was made in late Dec. The diagnosis was from one of the blood tests though as all of the test were normal except the one blood test for anti-MAG and slightly slower EMG. I was put on 10mg prednisone but did not notice any improvement. I did not notice much motor deficit but the tingling was going farther up my legs, tingling in hands, some facial tingling, ataxia, tremors in right hand and occasional breathing issues. In early Feb I stared the 5 day IVIg treatment. A week later I developed a Deep Vein Thrombosis in my leg. I started to feel better though. I did have have a very rough 4 day stretch but then except ataxia, not bad. The last four days have been bad again.

I hope this helps.