Reply To: Long Newcomer Story/Guidance Needed

Thank you all so much for your replies. I was readmitted to the hospital (same UTSW that’s listed in the center of excellence list here) from Wednesday-Saturday. By Wednesday I could barely feel my legs at all, was short of breath, and had fallen 3x, one of which resulted in banging my head against a tile wall. They were pretty adamant that this was not the AIDP flaring back up from three weeks prior; rather, they felt this set of symptoms was all in my head. They started taking me more seriously after PT confirmed that I could not, in fact, use my legs, and when with little warning I suddenly got violently ill, sustained high HR, high BP, and low O2 sat. They ended up adding to the diagnosis, so it’s now AIDP and SIRS (severe systemic inflammatory response syndrome).

I followed up this morning with a more conveniently located neurologist affiliated with Baylor who works with AIDP and CIDP patients and she was so wonderful and reassuring. I’ll continue to learn more on this forum and appreciate that this support mechanism is here.