Reply To: Exacerbation – scared

Thank yall all so much!!! I can’t tell you how much yalls replies mean to me, especially in my freak out mode like I have been in this past week!!! I was a nervous wreck most of today.. woke up thinking MAYBE swallowing was a little better.. hands DEFINTELY felt better thank goodness! However, I was completely freaked out by the swallowing.. legs/hips almost back to normal. but, then this evening I took my pills and I could swallow SOO Much better! I picked up crayons to color with my daughter and had my dexterity back mostly.. Talk about a RELIEF!!! this whole thing is so crazy!!! I’m still not back to what I was a few weeks ago.. but I”m only 2 days post IVIG.. Usually it’s 4 days before it really really hits me well.. what a roller coaster!!
As far as breathing goes.. I haven’t felt any difficulties breathing this time.. i have had chest pains the entire time, especially with deep breaths or when my heart starts racing.. and I get it during IVIG too, though a different kind.. Difficulty breathing for two months that gradually worsened is what landed me in the hospital for my first IVIG back in december.

Shellbones – I’m sorry you have had to go through this, but man it is nice to hear that someone else had gone through similar and is doing ok! I have never tried any steroids whatsoever.. I wonder if I should?? Since they think I have multiple autoimmune issues.. it seems like it could help!
Lori- thank you – that helps me calm down a bit hearing that there are more options out there if this doesnt’ work.. I stress about the immunosuppresants with work and all.. if it will be smart to continue where I am.. but I guess i’ll cross that road when/if it comes to that. I was worsening before this new brand of IVIG.. I was just hoping it would “kick in”.. how many days until yall feel it kick in usually? for me its generally around 4

GH- my dr is aware that I have had “awkward” swallowing since this all started.. they did the autonomic testing on me a while back which was postive (heart rate in the 160’s – whew I felt bad when that was happening)! My resting heart rate when this all started was in the 140s!!It was awful! No difficultly breathing this time..Thank goodness! I can still walk and talk thank goodness, but I think my dr isn’t as concerned due to that as well.. Though they are treating me which is what matters!

Thank yall.. I’lll keep yall updated.. I hope that the IVIG continues to work in the coming days.. and I think i’m headed towards steriods/immunosuppresants or something in the near future.. i’m having too many relapses it’s just not well controlled!! this is stressful!