Reply To: Flu vaccine – do yall get one?

Great to hear from all of you too!!!! Thanks so much for the advice!!

I had my follow up appointment with my neuromuscular neuro last week and they recommended me get the flu vaccine.. they said people who had acute GBS resulting from a vaccine absolutely not.. but the slower onset CIDP that isn’t felt to be from a vaccine was ok.. and since I work around sick people and have two small kids who go to school, it was strongly recommended.

Do any of yall feel short of breath with your CIDP?? I have from the get go, that’s why they admitted me 1 year ago. I was so thrilled.. when I went back to the neuros office last week, they rechecked my PFTs (pulmonary function tests), and they were much improved (from 72% to 87%)!!! 🙂  and I was still feeling quite short of breath last week- so I was thrilled to see concrete numbers of improvement! 🙂

I went 4 weeks without IVIG this past month, which was a big mistake! I had the stomach flu and was so sick for almost two weeks, so couldn’t get it.. they were also going to start trying to extend me to 3 weeks .. though my symptoms started returning – swallowing difficulty, face drooping, hips and shoulders super weak, and my fingers went jello like.. also my foot is super numb (like I”m walking on a sand bag).. all from missing one round of IVIG!!!  Does this sound normal??  My poor veins ache from the IVIG>. they are so irritated.. I feel like they need the break!

Hope everyone is doing well!!!