Hi all, I was diagnosed with CIDP on 17 October 2013, I must admit I never heard of this or do not know anyone who has been diagnosed with it. Its been some journey. If I could turn back the clock and fill In the tick boxes of the last year or so, maybe I could have diagnosed this earlier. I do not come home every day and fill this in. My numbness in my toes started a few months ago when I noticed a fly walking on them and could not feel it. Well so I thought, smoking for 36 years, paying the price, so you keep quiet. Numbness in finger tips, I am a toolmaker by trade, own my own engineering buisness 21 years, work 12-14 hours a day with my hands, paying the price for this !.
Had a bad bout of gastrointestinal 2 days before being admitted to hospital and could not walk any more. Numbness till elbows, and up to knees, chin, lips and mouth, scalp, nose tip, ears lobes, and private parts. All extremities so to say.
Doctors were convinced it was tumor in the cerebrum, sent for 2 MRI scans, and it scared the daylights out of me, not the scan but the thought of a brain operation. They were really suprised when it turned out negative. Next day tests, 2 spinal taps to rule out MS , motor nuron, very high protein count in spinal fluid, by then I was wheel chair fit, pumped full of corticosteroids 750mg drips I think. After day 3 progressed to a walker, day 6 to two crutches, sent home day 8. Many tests, 22 blood tests, 3 spinal taps, no reflexes from knee down and elbows down, computer tests on speeds of nerves below the 1, whatever that means . Diagnosed......GBS....CID
P .... Mellor Fisher Syndrome, sorry forgot to add most irritating symptom, double vision... very bad.
Now 5 weeks nearly down the road, ONE crutch, need to be very careful, can do stairs, recieved glasses with special prisms to fool brain to see one picture. Still have complete numbness in hands and feet though. Have severely sprained my right ankle at least 5 times, deep pain in bone, no feeling in flesh though. Numbness in mouth and lips a bit better. Struggle with simple things like buttons and shoe laces. On the whole, i am satisfied and thankfull as I read so many of you are in so much more severe state
I have the best wife, children (2 boys, 28, 23), best freinds, best fellow Christians and believers, hundreds of people praying from all faiths to our Almighty God. I have the complete in full structure in all my facets of life.
My heart is at peace, I have time for so many things which have been nagging me over years, decluttering so to say. My priorities have had a 180 degree turn around.
Still on 40mg of corticosteroids every morning, starting my homeopathic meds today and weening my self of the drugs 5mg every 10 days. Will keep you posted on my progress.
Thanks that I could write to people who understand. I include you all in my prayers.