December 22, 2023 at 2:50 pm
Hello : History of GBS 2002. 99 % recovery,maybe my legs not as strong. 2018 after levofloxacin I have been battling ever since. Have every symptom for CIDP but fall just below my Neurologist criteria for a treatment for CIDP. EMG is abnormal, spinal tap proteins high but not severe,numbness , weakness and severe muscle loss . The feeling is so reminiscent of my GBS but at a very slow pace. How bad does a person have to be before a diagnosis is definite. My worry is when too much damage has occured !!! Any thoughts appreciated Thank You and Happy Holidays and PRAY FOR PEACE Please
December 22, 2023 at 4:22 pm
After my CIDP symptoms began in 2016, it took over 2 years and 3 different neurologists to properly diagnose me. I don’t know if my situation is similar enough to yours, but the more stories you hear, the better your chances of being set on the right path. I, too, had a spinal tap protein check (inconclusive) and multiple EMG tests (also inconclusive). Finally, my 3rd neurologist figured out a possible connection between my primary immunodeficiency (PI) and my test results. Once my next EMG was timed properly with my PI treatment, the test was now conclusive.
Let’s get you “fixed” before your immune cells start munching away at your axons!
Best of luck, and Happy Holidays!
December 22, 2023 at 5:31 pm
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.
December 24, 2023 at 12:09 pm
My apology : Have a blessed Holiday for All Tim
December 27, 2023 at 3:30 pm
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
January 17, 2024 at 6:27 pm
I don’t have any treatment advice for you, but I do want to share you are not alone. I was diagnosed with Miller Fisher in April 2022, and it has been a battle trying to get decent treatment/help. I am 25yrs old, so a lot of doctors that have seen me dismiss me into needing any extensive treatment because of my age. I have been in a wheelchair since but I pray to God that something comes along the way. I have sensation everywhere and luckily there was no nerve damage and I have pushed myself to walk with a walker at most 30ft which has been good! My spinal tap/CSF did show the bands as well which is why they diagnosed me. I hope you get the treatment and answers you deserve before it gets worse as it has been for me!
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