I am so glad to have found this site I have just in the last few weeks been diagnosed with CIDP and I am scared silly. You can tell hopefully by my name I am female and I will also say I'm 37.
Luckily for me my diagnosis has come quite quickly, I started with numbess and tingling in my fingers and toes in July 2015 which spread to my hands and up my legs over the next few weeks. I saw my GP early September and they thought it was a vitamin B12 defficiency based on blood results and started me on B12 injections. The pain kicked in a few days after the injections started and the numbness carried on spreading. The GP was great and as soon as my tongue and face started to tingle and go numb they referred me to a Neurologist. Luckily for me I have private medical insurance through work and saw one within a week. Over the next few weeks I was getting worse, MRI scan of brain and neck showed no MS lesions although it did show arthritis in my neck, nothing that would cause the syptoms I was getting though so onto Nerve conduction studies.
Went back for the nerve conduction studies results on 5th November having got to the stage where I was falling over and all up my legs was numb and up to my elbows. When he saw the deteriation the consultant decided to admit me to the local NHS hospital the following day for tests.
2 weeks later on 19th November I was discharged. In that time I had more MRI scans which showed MR thickening and enhancement of the cauda equina (whatever that means), more nerve conduction tests which showed I had worsened by a lot in the 3 weeks between tests. CT scans, countless blood tests and a lumbar puncture which showed elevated proteins. While I was in I had IVIG spread over 3 days and came out the day of my final dose. The numbness is reducing and I am slowly building up some strength again although I am now tingly and burning instead of numb at least I can feel something.
The question is what now????? The consultant wants to see me this week but as with all CIDP diagnosis they do not know how it will affect me, how I will respond to the IVIG etc. I know noone can give me a definative answer but does anyone have any idea what the treatment plan usually is on the NHS? My medical insurance will cover acture flare ups but not ongoing care for a chronic condition so I am going to be reliant on the NHS and how they want to handle it all. How long does the IVIG take to work fully? how long is it likely to last?
From a personal prespective my partner has been fantastic, he only moved in with me in August has lost his father in the last few months and now has this on his plate. I am scared and I know I am not easy to live with at the moment, I'm tired, snappy and worried about how CIDP will affect me physically and if I can deal with it. Prior to this I have always been accident prone but never anything more than broken bones and I was working full time and very independent. Now I can barely get up the stairs, shower, clean and am off work for the foreseeable future. I feel so guilty that he has got to deal with this and know that I am pushing him away. I am trying not to but something seems to take over and make me want to do things for myself just in case he decides I am too much hassle and leaves me. I love him to bits and know he loves me but I can't stop myself pushing him away even though I know it makes it more likely he will give up on me. Am I going mad as well?
There is probably loads I have missed but my memory is shocking now. Thank you for reading and if there are any questions or words of advice it really is appreciated.