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

February 4, 2014 at 12:06 am

bny806, thank you for sharing your experience. I am glad to see you are doing well! I hope you will continue having great response to IVIg. I can’t believe all your tests were normal. These tests are really just not sensitive enough. My biggest fear is I am one of the few with bad symptoms but normal tests. How will I ever get diagnosed?

I started to have classic CIDP symptoms after a flu shot a few months ago and am getting progressively worse. But the tests to date are not conclusive yet. I know there can be a lag in test results so I am just hoping my next test will beat the lag and show abnormality. In the meantime it is terrifying to do nothing and watch symptoms getting worse and damages being done.

Right now my balance is bad and hands tremor very bad, so I am hoping the next NCV/EMG test will at least reflect that. My last LP was high normal so I am hoping given it a bit more time it will climb up so I will have a diagnosis and be able to start treatment.