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

January 31, 2014 at 6:40 am

I can’t remember what the neuros told me when I was initially getting tested, but I want to say they told me that the damage done can lag a little before it shows up on EMG.. DO you have sensory symptoms as well, or just muscle weakness? have they tested you for things like myasthenia/lambert eaton etc? what parts of your body are affected? I had the GI issues first for a few months and then the neuro symptoms started.. it was about 6 months from time of “hey something is majorly wrong here”, until I got IVIG… I went from just having tingles/paresthesias waking me up at night in my feet, then hands, then shoulders up to tip of tongue to not being able to breathe or swallow, whistle smile etc.. My breathing is what landed me in the hospital to get IVIG.. My initial EMG/NCCV had some mild demylenation around one knee, which was my first symptomatic area (maybe about 3-4 weeks after i felt that weakness- floppy knee).. otherwise my tests are generally more negative (aside from ANA, epidermal nerve biopsy, autonomic testing etc)..

GOod luck! I hope you find answers and treatment soon! 🙂