Reply To: 3rd IVIG not as effective?/relapse?
Thank yall both so much!! I know, it was hard not having this forum! I can’t figure out how to message individuals either… How do I even send you my email address without posting it on here for everyone to see???
I know with the first round of IVIG, i thought It might be working, but then I thought it might just be placebo effect , since i soo badly wanted it to work (without a firm diagnosis in place I still feared and honestly still do fear some bad case scenerios)..but then I felt it start to wear off (around day 14 or so) and realized IT DID work…. phew! I still can’t get over the 2nd round – AMAZING! But, it defintely started wearing off at day 15 post infusion
I’m glad to hear that others seem to think it wears off quicker or isn’t as effective when sick.. Have yall gotten sick more frequently being on immunosuppresants? I am only on 30grams, I wonder if going up on the dose would help any as well as increasing frequency? Did yall try steroids? I just hate the thought of steriods…ugh so many bad side effects, but if it can help I’m all about it!
Shellbones- you mention less fasiculations…it was the strangest thing, about 10 days after my last IVIG infusion, I was sitting down one evening and thought something seemed odd (besides the HUGE smile on my face that i felt so good).. I realized that I wasn’t twitching!!! For the first time in TEN months – NO twitching!!! for about 10 days I didn’t feel a twitch, and it was just odd – in a GREAT way!
The worst part for me is my speech, no one can hear my slur … but it’s defintely there along with difficulty swallowing/odd sensation swallowing.. i had NO speech issues for three weeks after my last IVIG… It makes my mind go back to the motor neuron fear (despite THREE clean Emg’s.. I still can’t shake the fear). my face has been completely numb for the past week since I feel like this “relapse” started.. it’s all so strange!
I have my follow up appointment tuesday, so i’m curious what they will say! Thank yall!