Reply To: IVIG/treatment and symptoms
Thanks so much Lori!!! I couldn’t agree with you more, I just can’t even imagine how hard it would be to watch my children go through this.. That would take some serious strength!!!!! My heart goes out to any kiddo and parent that has to go through ANY illness other than the usual childhood colds etc!
I do think I should go to mayo, but in all honestly I’m just sooo sick of seeing dr’s and being poked and prooded! I feel like that was all we did for months and months.. so even though I wouldn’t say that our life is normal at this time, our new normal I guess, I just am enjoying only the occasional follow up and that’s it right now.. I know that’s not the smart choice.. I’m hoping that we can continue to tweak the IVIG and at least halt the progression of this mess… but defintely if things worsen, then I know that’s what we will need to do – go to Mayo, or somewhere similar. Ugh.. I just want to forget about it as much as I can.. hahha but that’s impossible!!! I heard yesterday a girl I went to high school with passed away after battling with a chronic illness for a few years, she had two small kids… It’s just so scarey the way things happen, and so heartbreaking.. Even if I do end up in a wheelchair, i’m ok with that as long as I can be here to watch and help my kids grow up.. hearing that news just really made it hit home how tomorrow is not guaranteed by any means..
I”m SOOOO glad to hear that the IVIG worked this time!!!! That is GREAT news!!!! My numbness always preceeds worsening as well! So does hot water/heat.. When I wash my hands under hot water, it’s just the strangest feeling ever and super tingly for a while afterwards.. Kind of worried what summer will bring here, after like 40 days over 100 last year!!! Ahh! I hear ya on the balance.. when I close my eyes right now I fall right over, that’s a new occurance since that last “relapse” .. The vision thing is just wierd! I don’t know to explain it, but when it first happened i couldnt’n drive, since I didn’t feel comfortable with the visual change- I almost hit our wall in the garage at first! yikes! I’ve adapted, but it has worsened this last few weeks, so it’s taken more adjustment.. I might try to find a neuroopthamologist?!?
Thanks again so much, and i’m so glad to hear that the IVIG is working better this time!