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Living with Polyneuropathy CIDP, GBS, & CMT

Rj from Indiana just diagnosed with cidp


#1

Hello my name is RJ and I have cidp. It all started back in January of 2018 with a tingling in my foot. Three days later I found myself almost completely paralyzed . I was diagnosed with GBS and given my first dose of ivig. Things seemed to get better for a few weeks until all the sudden everything went terribly wrong and I went into respiratory failure. I was life lined to Indianapolis where I spent the next month in icu receiving plasmapheresis. Which gave me brief use of my legs again but after another few weeks stated relapsing again . That is when I was diagnosed with cidp. I spent the next month and a half In rehab receiving therapy and ivig every two weeks. I’m proud to say I was released from the hospital April 27 and am still in out patient therapy and ivig every two weeks but I am now walking with a cane and just walked a mile f I r the first time since my diagnosis.


#2

RJ, I’m terribly sorry for your health struggles. I’ve never heard of such a rapid onset of CIDP before that went from zero to can’t walk in this short time frame. I hope that your recovery will continue and that you’re able to continue to reclaim your lost health!


#3

HibRJ- I was also just dx with CIDP last year for
Me it’s been a little More then 8 months. It takes time and patience and a lot of support- not only from friends and family but your medical professionals and this group can provide a lot of help as well. I don’t generally respond to anything but your story touched me. I have utilized this group as a support system that I haven’t been able get from those around me who don’t always understand that I am not as able to do the things I used to be able to do.
Make sure you have a great neurologist and a family doctor whom work closely and well together. I wish you all the luck in your progress. Krista


#4

Thank you vary much. So far everything seems to be going in the right direction and hopefully continues in that direction. To me so far the most scariest thing is not knowing if of when I can have another relapse. I’ve been through so much in such a short time and I continue to surprise myself and my doctors because once they got me on my feet again how quickly I ditched the Walker and the cane. But I’m a fighter and as long as I can I’m not going to let this beat me


#5

Relapse, schmelapse. May as well steel yourself for the possibility, and mentally work through how and when it might occur, and what the consequences might be.
Maybe think about what hope means for you and how you can maintain it. Losing hope is the big problem with relapse, in my view. Above all, maintain hope.