Reply To: New to CIDP, brand new mom and only 37
Hi, you are not alone! I came across this site whilst trying to find if others have been ‘cured’ so to speak. I saw your post and felt I had to register and reply! I am a 34 year old woman and have just been diagnosed. It truly is scary, especially when you spend those first few months just thinking it will go away and fobbing it off as ‘oh I’m a bit unfit at the moment’ or ‘I must have trapped a nerve’. I started to notice changes towards the end of May this year, all the same symptoms that you have described. All of a sudden my legs felt heavy and walking up the stairs became harder. Walking normally became strange and I felt like i was waddling almost. I started having tests in June and by July I was in hospital for 2 weeks where they did the lumbar puncture that you had and found protein levels 3 x the amount in my spinal fluid. They originally diagnosed me as GBS but have since said it’s definitely CIDP due to it’s slow onset and continuing. They treated me with 5 days IVIG and that did make some difference. I was able to scrunch my toes up and started walking a bit better, it was still hard work though. When I went home I wasn’t on any medication but after nearly 3 weeks I called the consultant and he saw me again as I felt I was going downhill. I kept losing my balance and needed to hold onto walls to walk. My left foot has no flex in it and is a bit frozen and I can’t wiggle my toes. The tingling has stopped but I get a few aches. My fingertips feel a bit numb and my hands and arms sometimes ache but i am hoping we can control that. Everything is still hard to do, especially stairs. I find I have days where I can go up and down the stairs 2 or 3 times and then the next day I might have to rest up for the day. I am very lucky I work for myself, from home, but it doe mean I am on my own a lot of the time.
I have worked out ways to wash safely by sitting on edge of bath and swinging myself around, using my arms to get me in and out and with practice it gets easier. Getting up from the toilet is a mission!!! I need to put some grab rails in soon. I don’t stand in the bath as my balance is really off. I find the balance thing the worst. IF you still struggle with your balance do you have crutches you can use? If not, please do get some as they are really helping with my balance. It means I can actually go out without clinging onto someone. Also, I bought a perching stool for the kitchen so I can start cooking again and sit at the worktop without getting stuck in a low chair feeling useless. All these gadgets really start to help and make you feel more positive.
I’ve only had one 5 day IVIG application back in July and I really feel I need more. I have been on 40mg Prednisolone for 4 weeks and neurologist has upped it to 60mg for 4 weeks but I’m not seeing any benefit. He has finally said that I am going to have another 5 days on IVIG eery 3 weeks and then see me again in 6 weeks time to see if there are any changes. I am feeling really positive about this as i did initially see changes when I had it, and it is more natural than steriods. It sounds to me that you responded really well to the IVIG when you had it as it eased your symptoms. Are you having more of it? All I can say to you is to keep on pushing your doctor to give you it frequently as it clearly works for you. I have read that CIPD sufferers respond well to regular IVIG, and I am really hoping this is the case for me. I would keep my fingers and toes crossed but that’s not physically possible Hee Hee! Got to have a sense of humour!
How are you coping with a new baby? I do wish you all the best. My husband and I finally reached a point where we were ready to try for a baby, we started the month before my legs got weak and then stopped. I am now really hoping I can get this under control so we might be able to have a baby but it does worry me. I would love to know how you manage.
At the moment, as I am also new to this illness, I can’t give you any more information but you are definitely not alone. It’s very scary once being so active and young and then having this happen to you. I tell all my friends to never take for granted all the little things they do – loading the washing machine, running to the toilet, going for a walk! I am hopeful though, and have to stay positive. I wish you the best.