Dx included spinal tap which looks for high protein values; EMG and Nerve conduction Study; and clinical history– severe weakness in limbs, numbness in hands and feet which was what I had. I had no reflexes in my arms and knees. I had an MRI of the brain–to rule out MS.

Hi Andrew,

So you could tell that this is all new to me? I’ve been a member over a year and it has taken me this long to figure things out.
I’ve been diagnosed with CIDP the antimag is non specific for IGM if I have any clue what I am talking about.
Other than Rituxan have you received IVIG as well? They would like to start this following 4 treatment oif Rituxan.

Best Regards,
Lori

Eoin:

I have a chronic progressive CIDP variant called MADSAN or Lewis-Sumner Syndrome. It is marked by asymetric weakness plus cranial nerve damage causing severe double vision. It is an atypical presentation of CIDP in some regards. I have had two spinal taps with the highest protein count being 53. I am quite disabled, and suffered one very severe 8-month long exacerbation that basically left me house-bound for several months. My NCV/EMG does demonstrate severe demyelination and axonal damge, however, my protein count is lower than yours. So, the neurologist is just plain wrong regarding a protein count of 65. I do respond to IVIG in that it slows progression. If I miss an infusion, my progression increases like clockwork.

My case developed slowly and insiduously – I tried to ignore it, then, it grabbed me big time. I would pursue your case vigorously now, while symptoms are still mild.

I’d suggest seeing a neuro muscular specialist at a teaching university.