Reply To: Hip Weakness/awkwardness anyone?

March 16, 2012 at 7:59 pm

That is great to hear!!! I have been wondering about working out, I really want to get more toned.. I’m out of shape from all the pregnancies first of all, and then mostly from all of this, and super white too haha (does IVIG increase sun sensitivity?) We are goign to try to go to a beach in May, so I’m not looking forward to being in a swimsuit :-0!
The only time I have ever had any cramping with this whole thing was at the very beginning in that first three or so weeks when it suddenly “hit” me, none since then. but the last couple of days it feels like a few of my muscles are thinking about cramping up, which freaks me out in a whole new level about the whole als thing – I wonder in my head – is this spacicity or something? I seriously have PTSD from that first dr’s appointment, and I soooo wish I could shake it.. or at least have a more definitive/concrete diagnosis (aka csf have very elevated protein or something)!
So what made you add the imuran to the IVIG? how long did you try just IVIG before deciding to add it? I am wanting to send our kids to a school but after having such a set back after a simple fever/cold a month or so ago I can’t afford for them to bring home illness, not to mention taking care of sick kids is harder as well, though getting a few days off a week to relax will help.. so who knows what the right answer is!?!! Did getting sick/viral illnesses make you relapse?
speaking of rate with the IVIG.. we went faster this round – 100 for maybe 1 hour, then 90 for several hours (usually stay no higher than 80 due to chest pain, but none this time or the last), well last night my head started hurting, then my neck and whole spine.. i woke up with an AWFUL headache and my entire spine hurts with every step when i’m walking!!! UUUGGH, feels like fever chills- good ol aseptic meningitis again I guess (though not quite as bad as when in hospital that first week).. but still no fun.. so I won’t be going over 80 anytime soon again! To add to it – I’m home alone the last two days and next four days since hubby is out of town and no family or sitter.. quite a painful experience with two kiddos jumping on my head!! :0 !