Reply To: IVIG/treatment and symptoms
Thank you so much Lori!!! I know.. you are sooo right, I don’t want to settle for that, that much is for sure!!! It is hard going to neurologists of all specialities I think since so many of their exams and tests are so subjective! One Dr will tell me they can’t elecit my reflexes, while the next says they are brisk, and the next says they are normal ahh!! haha.. I tell my husband a lot.. why can’t it be like a pregnancy test- you just pee on the stick and walaa! there is your answer! :)… and treatment plan… and dose etc haha..
As far as diagnosis, my dr is confident in their diagnosis it seems.. after the autonomic nervous testing, plus ANA, plus nerve/skin punch biopsies all coming back abnormal (pointing towards CIDP), they tell me I have “inflammatory polyneuropathy” and write down CIDP, they say some sort of atypical CIDP.. After my exacerbation/relapse my most symptomatic leg did have decreased reflex (from normal for me) on that side..
Since this last IVIG.. my symptoms defintely improved, though not as much as that 2nd infusion did.. but I can walk without thinking twice (a few weeks ago I was a mess, barely able to walk due to bilateral hip weakness).. My speech was bad and everything, now it is all WAAY better.. SOO thankful for that! I plan on calling my dr when I feel it wearing off (I think I might a little today, but we celebrated my son’s 1st birthday this weekend with house guests all weekend and not enough sleep).. So, i’m goign to get good rest tonight and if it’s still feeling like it’s creeping back, I’ll call and request a more aggressive plan. It’s hard to think with my son’s birthday being 1 year, that I have been sick most of his life (it all started at about 7 weeks post partum with the IUD). .. I just hope we are on the right track!
Lori- did you have muscle wasting? I do in my hands.. both symmetrically.. Since that 2nd IVIG it has improved in the palm/meaty part of the hand, but on the top/backside it looks like it might have worsened a little, though my hands are no longer weak! I also miss the private messaging.. how could they forget such an important feature??