Your Replies
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Hello Mark , If you could share about your EMG being timed with your PI treatment. I am uncertain of a PI treatment. Are you still receiving treatments ? Thanks Tim
Mark Thanks for your time!! My spinal tap proteins are actually high enough by cidp guides > 45 . My number was 51 two years ago. My emg is not normal and they dismiss it as leftover from GBS. After my recovery from GBS in 2003 I literally worked 80 hrs plus a weak running chainsaws ,digging with shovels , peg and timber construction building our golf course.No way is the deficit on my EMG s are leftover from 20 yrs ago GBS. Every aspect of my body is affected. Numbness in the front of my tongue.excessive fatigue,extreme muscle loss. I am on gabapentin daily at 1800 mg for nerve pain. The Docs listen in one ear and totally dismiss you. I know I need IVIG trial . They dismiss it actually by in terms summed up as test aren’t bad enough.
Hello: Has anyone been treated with Hizentra as a stand alone treatment. No ivig as the primary treatment first?
Hello Gary: Give me a call when you have a chance. 724 991 0665 Thanks Tim
Hello Gary : I have some thoughts for you and a Doctor that you may want to contact. Have a BLESSED EASTER !!!!!!
Hello Peter: Keep a positive outlook. I understand that it can be hard. May the IVIG put you on a path to a recovery!!!!!! Also thank you for your reply. I have to keep pushing for a diagnosis as I had GBS in 2002 and this is such a familiar feeling but with gradual deterioration. Thanks Again Tim
I do not have any info for you on Axonal Neuropathy. Search the internet with every wording relevant ,this sometimes can float to the top the help. All the best Gary! Tim