A newbies entrance

I have Just found this group and I have to say it was a bit of a surprise. CIDP seems to be one of those 'never heard of it' conditions, you know when you tell a person why your walking with crutches or why you have splints on your wrists and they just reply with that blank look on their faces.

Its a look that in a split second can diminish just how bad it can be to suffer from this condition, tell someone you have cancer and they cant feel or do enough for you but tell them you have CIDP and you lucky to get a 'that sucks'.

I must have gone through the whole explanation thing around 300 times since first being diagnosed in 2001 and I can count on one hand the number of people who truly got it, most of them suffer from equally debilitating conditions which I suppose means they don't really count.

I'm lucky I have a very good neurologist on my first appointment he greeted me by shaking my hand and exclaiming 'I've been looking forward to meeting you, your a really interesting case. Funny what you can see as a good thing when you suffer from a bad condition.

I'm what we call here in the UK an Expert Patient, someone who is recognised as having knowledge and experience that most GP's and an awful lot of hospital doctors might not have due to the lack of exposure to certain medical conditions, I have conducted lectures in teaching hospitals and I'm always speaking to medical students while receiving my IvIG infusions, and I always like to have a complicated question up my sleeve to try and catch them out.

I have even been asked to council other CIDP and GBS sufferers when they have first been struck by this condition, its hard sometimes when the doctor tells them to expect a full recovery and whilst you wish that for them in the back of you mind your thinking 'yeah but don't bank on it being easy or even possible'.

I have a lot to say about my experiences with CIDP and the circus that often accompanies it but I'll save that for further blog entries for now I'll just say HI.

Bill - I totally agree. I start with "I have CIDP" then, after the blank stare, tell them it's the chronic form of GBS. Most people have heard of GBS even though they haven't a clue what it is or the symptoms. Looking forward to more posts from you; my symptoms started in 2011 and I just received a "provisional" diagnosis of CIDP two months ago.