I had my EMG at the University of Washington in Seattle. Compared to the one from 2 years ago it shows further damage, still mostly sensory with some axonal. Damage is severe, the neurologist told me. Based on what he sees in others, it is as bad as it gets. However, he is willing to try either the double-dose Rituxan or the PP and cyclophosamide (Cytoxan) but does not expect big improvements because the disease has advanced too far. The Rituxan may continue to be ineffective. We discussed again the risks of either treatment. A small one may be PML (progressive multifocal leukoencephalopathy) which is always lethal. There have been 2 cases in CIDP patients recently. Another risk is living with small children now who tend to come down with infections frequently that might find me defenseless. Right now I feel it would be best not to get any treatment and just live with it. It seems risks outweigh chances for improvement. I might change my mind later, though. Who knows 😀
Isn’t funny when your emg is normal that you are normal and fully recovered. I HATE THIS!!!!!! Some or all of us might ever be so called normal. I want my life back as I’ sure many of you do. The norm sometimes for them is that they are delusional. Just tell them to walk a mile, if they can, in oue shoes. xoxoxoxoxxoRoxie
Well, my EMG/NC was today and the dr. is just as frustrated as I am. Everything came back “normal”. He’ s going to review my results then ship me down the the University next week.
I have not seen any noticable improvement in my legs, mouth, arms since begining my PE on Tuesday.
Any ideas or advice???? Any other boards or forums you all visit you can recommend?? I did look at the Conversion Disorder. Wow! I suppose it could be possible, but it sounds more rare than GBS even! My neurologist doubts it.