CIDPWhat

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  • CIDPWhat
    March 20, 2015 at 9:41 am

    You’re welcome. For me it started in my knees – a place I have never had pain in before. Over time the pains spread to other areas – so I naturally thought it was aging. Then everything just started going down hill. I used to be very active – so some of it I blamed on my need for physical exertion. LOL.

    You’re general practicioner may not diagnose this as CIDP – you really should look into a Neurologist. My GP originally diagnosed me with Fibromyalgia… Which (from what I hear) is very common – or MS. My Neurologist had heard of CIDP but never diagnosed anyone with it before. So, my diagnosis came as a big shock to us both.

    I understand the need for answers. 🙂 Good luck to you too!!! But in all sincerity – I pray you don’t have CIDP. But, it doesn’t hurt to rule it out.

    CIDPWhat
    March 20, 2015 at 9:35 am

    I’ll be honest. None of my symptoms made sense to me. For me it started with GI issues, then my knee hurt walking down hill, then the numbness and tingling started – then as time went on it turned into extreme fatigue and memory loss and my eyes – oh how my eyes hurt. I thought it was all just natural aging… My neurologist asked me (during the lower emg) if I had numbness and tingling in my feet or legs? I said, “Yes, how did you know that?” I thought this was just part of aging. He said, “How old are you?” I told him “45”. He laughed and said, “No, this is not a normal part of the aging process.” I never thought to tell him this information in my first visit with him – because of what I thought was going on where that is concerned. I have wore high heel shoes for years, sat in uncomfortable desk chairs… I had no reason to think it was something more serious.

    But to your question. My symptoms started in 2010. I would say symptoms became progressively worse over the course of a couple years – but 2013 to now the symptoms have become much worse and progression even faster. Until my first IVIG I had a new symptom pop up every 3-6 months.

    CIDPWhat
    March 20, 2015 at 8:33 am

    Hello Timtcee, I was recently diagnosed with CIDP – and yes back pain is part of it for me. Interesting thing is I never connected my various pains to each other. I thought my back was bothering me because I had back surgery a long time ago. Since my surgery I have had little to no pain at all. But, in the last year the pain has returned – but different. My Neurologist ran an upper and lower EMG and told me I had sciatic issues (among other things that left me speechless as in “how did you know). That surprised me because I don’t feel any sciatic pain (as I did a long time ago).

    I thought these various issues were due to aging. Guess not. My diagnosis came after a hard fought battle – I hope your road is an easy one. 🙂 Good luck.