Keep us posted!
Hi Erin – yes i can imagine how ‘blown away’ you were when you go in for a shot and get sent home with all this to process!!!
A lot of good info has already been passed onto you. I was your age, with my youngest also just 2 when i was thrown into the CIDP realm. That was 3 yrs ago now – hard to believe – but yes you soooo should have the lumber puncture done – it will give you accurate results- and you will then be able to head along the right treatment track from there.
There is also no point worrying about the unkown – it may never happen. Enjoy your precious child – they can often be the best medicine!!!!!!!!!!!
If it all turns to custard – you will find ways to cope – and for this you will just become even stronger!!!
all the best
Keep us posted
Hi there Deanop, just wanting to make sure youll keep me posted with how things go. I noticed the improvement slowly on a weekly scale really, basically just regaining ability to do start to do things again (ie lift arm a bit higher etc and then the added strength came later. Like you am also very keen to hear if anyone attend or has notes from the recent session from Dr Parry.
I forgot to mention before to help reduce some osteo/bone issues etc from being on the methylpred i am on daily calcium tabs and every 90 days have an oral 2 week course of etidrate (biphosphante).
i would say overall now am 90%-(maybe 95% to sound ambitious but not wanting to jinx things!!!)back to pre CIDP ability.
look forward to your progress reports!