New member. Recently diagnosed with CIDP

Hi, my na, is is kris, I just turned 50qnd for my pr ant, I got a new diagnosis…CIDP. I have had MS with a seizure component for several years and truthfully thought they had just misdiagnosed me. Lol nope, my neuron is someone I have worked with for years, as are the other doctors I see, I don’t really care for change but I guess with this, I should get a little more accustomed toot. I am currently wheelchair bound and have help; but for the most part my HS and MS science students help me with things at school,Ike setting up, tearing down and passing things… otherwise papers generally fly across the room. I was lucky in one way, in that myoctors had me on IVIG for my MS because I had failed so many MS mess, we tried IVIG, while for me it isn’t a perfect med, it does help. I am really more of a lurker, but truthfully, I don’t know much about CIDP, I don’t know how it will interact with my MS and seizure activity. And truthfully, this really sux. I am tired, more so Thani ever thought possible, I used to be able to coach, teach, tutor and still have time to cook. Now I feel like someone flipped my life upside down.
So, enough of the whining, I am leased to have trifle the world, completed my education, raised two kids, a beautiful and smart set of adults. Who. Gave me five grandkids. I make candles and bake whe I have help or energy… and for the most part try to ignore the pain… can’t scare my students… so. Can’t tell you whe I got sick, do t know, I did the tests and it came up positive in June of this year… I don’t know if the reason n I can’t see very well is MS or CIDP or the IVIG. But I’m going to take it a day at a time and hopefully learn something as I ha g around here. Kris

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Hi Kris, welcome to Living with Polyneuropathy. Gosh, it sounds like you have accomplished so much in the face of adversity. You are an inspiration :muscle:

I don’t know much about MS, but I do know fatigue plagues most of our members with CIPD. I did a quick search on fatigue and came up with this old thread, maybe there are some helpful ideas here.

Keep us in the loop and let us know what works for you :slight_smile:


I’m sorry to welcome to the CIDP family, but it’s not so great a family. MS and CIDP are related anyway in they both demylinate. Pain management is a must so seek out a pain management doctor as the neurologist won’t go there too much. Red Bull or Monster for energy is good or caffeine pills to give you a boost. If possible get a physical therapist to help keep or regain some muscle.
Pray for healing as CIDP does go into remission but when it does the pain remains, at least for me it did.
Try to stay positive in the face of incredible challenges. God bless you!

Hi William and Canadian girl, thanks so much for the words of encouragement. I so my week of ivig next week so have to make sure my last two periods of plans are done, I see what you mean about pain management- I have seen the same sr for pain management but I’m afraid to tell him that the meds aren’t working, I do not want to be looked at as someone who is seeking drugs, so I usually just say thanks and deal with the pain, my boyfriend thinks I should insist on a change in meds but I don’t really care for confrontation- but again thanks for everything

Confirmed CIDP can be very painful and without addressing and getting the pain under control your quality of life can erode away. Asking for different meds or telling the doctor the meds aren’t working should not be confrontational. It should be compassionate and empathetic. Getting you comfortable is their job. DONT SUFFER IN SILENCE! You deserve better than just getting through it. You have to be your own best advocate. Your doctor would be dissapointed if you were not honest with them about what was happening with you. You owe it to yourself to ride up for yourself.

Kris - you have a double whammy with CIDP and MS. Can’t help but wonder the medical explanation if that. I know there are similarities, but I hadn’t heard of anyone diagnosed with both. You are so young! That’s a whole lot worse than those of us who were diagnosed in our sixties or later. I was diagnosed in 2009 at the age of 67. I can barely walk, ALWAYS on the brink.of falling. Zero balance. IVIG did not help, nor did Cyclophosphamide. ( That gave me more problems). I too am an educator, retired after 50 years. Teaching with ALL your faculties is exhausting. Don’t know how you do it. God bless the kids for helping you. You seem like you are holding up well psychologically. I handle the disease pretty well, but the treatments that ultimately don’t provide a long term solution but have significant risk of serious side effects depress the hell out of me.
Thank you for your inspirational posting.
Mike in New York

Thanks Mike, truthfully if I didn’t teach, I would sit in my wheelchair and simply feel sorry for myself. Those kids give me something to get out of bed every day… ever though it isn’t for myself often. When I see how my students engage, it makes me realize I still have something to offer. Oftentimes I feel like I’m more of a burden than an asset but teaching gives me the ability to give just a little something back… even if is to only one student… as an educator I did my job.