Hi Michelle,
PT is going ok but i totally feel your frustrations. I’ve been doing PT about 2-3 hours a day 3 times a week and also turned a spare room into a gym for my home exercise program. I still have lots of issues with weakness and balance so my therapists have been pretty creative to help get me not get bored with my exercises. I’ve installed a ballet barre and TRX rings- both are great at giving me stability as I try to increase my strength and endurance but it’s sloooooowww going. Maybe try switching up your routine?

I’ve also been getting ongoing IVIG treatments every 3 weeks and the week after seems to be a “good” time for me to make some gains since I have less pain & numbness then

Michelle, thank you so much for your reply. If I’m frustrated after only 2 weeks, I can’t imagine the frustration you must feel after 14 months. The irony is that the second I felt the paresthesias move up, I immediately thought ‘guillian barre’ since I was 3 weeks past my hospital-mandated flu vaccine. That’s why I got the second opinion when the first neuro couldn’t find a cause and said not GBs with negative tap. I’ve since learned that’s not all the uncommon early on. We learn about GBS in school but are told it’s so rare, we’ll never see it. I have worked emergency med and spine and sports med for years but have only seen it once. Well, twice now…
Thank you so much for sharing you’re experience and I wish you well and continued recovery.
I do have a more personal question- having been very active prior, how do you handle the pity? I’m constantly reassuring family, friends and coworkers that’s it temporary, reversible, it will improve… but it’s driving me crazy when I’m not feeling that great about it to start. I’m doing my PT at my own practice since I trust my therapists whole heartedly but don’t even know how to react when people cry (literally) when they see how I ‘walk’. I’d appreciate any and all advice and if you’d prefer (and it’s allowed?) I can give you my email. Thanks again