February 22, 2019 at 12:42 pm
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 thenDecember 19, 2018 at 6:36 pm
I have said the same thing about the lottery time and again the last week. The first neuro told me was vit B deficiency since primarily I was mostly sensory. Didn’t make sense since my b12 was above normal. Next day when I lost reflexes and motor, I knew I needed second opinion but was still being worked up for tick borne since it’s so common where I live. only thanks to my work connections, I was able to get second opinion rapidly and this guy knew and understood GBS. Scary what could have happened if I accepted ‘vit b12 deficiency’ for a diagnosis.December 19, 2018 at 6:26 pm
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