New to CIDP, brand new mom and only 37

    • September 3, 2014 at 9:15 am

      I was diagnosed with CIDP, less than a week after giving birth to a baby girl. I went to the neurologist in March when I became concerned with numbness in my fingers and toes but at that time, I had reflexes and no other issues. Being high risk, I refused the MRI and trusted one of the OB’s that it was pregnancy induced carpal tunnel. As I progressed through my pregnancy, my legs became weaker and I had the typical “wobble” but was surprised at how unsteady I was but again, assumed it was from the pregnancy. Unfortunately, the last two months I found myself working mostly from home because I did not feel comfortable driving since toes were numb. About a week or two before having the baby, I noticed an increase in the numbness in my hands. Five days after giving birth (c section), I was back in the neurologist’s office where I immediately had an MRI, EMG, spinal tap, blood tests galore, etc. I could barely balance or walk without assistance, get up and down out of the chair or bed, or take a shower by myself. I was “a hot mess”. A week later, I was diagnosed and started IVIG. I know I had improvement as I can now get up and down by myself and my legs aren’t as jello-like as before. However, I am a very active person who wants and NEEDS to take care of their newborn and with the pregnancy hormones raging, I am absolutely terrified now that how I am right now is going to be my future. I have read through this forum and have gotten very frustrated by the the many variations of recovery and treatment and the stories of people who I cannot relate to. Are there any folks in their thirties who have CIPD (not GBS)? Can anyone tell me “how” they felt when they were recovering and the progression (i.e. my feet started to feel temperature changes but increased in tingling starting with the big toe)?

    • GH
      September 3, 2014 at 5:34 pm

      There is indeed a great deal of variation in CIDP and it is not possible to know at this early stage how it will turn out for you. All that you can do is to seek the best treatment you can get, and to try to remain optomistic. Many people with CIDP respond well to treatment. My own case seems to be stable with only minor residual impairment. You should not assume that you will not be able to manage as long as you are able to get proper treatment.

      Although CIDP most frequently appears in older males, it does affect persons of both sexes in all age groups.

    • October 16, 2014 at 8:04 am

      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.

    • October 21, 2014 at 1:23 pm

      I am now 39 yrs old. I, myself was pregnant with twins in Nov 2011 and in Jan.2012 is when I started noticing sharp pains in big toe, then pains in feet and legs. progressively got worse. I am a hairdresser so it affecting my hand, they thought it was carpal tunnel. Then after delivering twins by c-section it all got much worse. I couldn’t do minor things with hands such as buttoning or snapping babies clothes. Balance was terrible. I went to neurologist in Aug 2012 had EMG testing done, then sent to neurologist where they said I had some form of GB or CIDP. Did 3 days of IVIg treatments twice. I’m not sure if that helped or just time passing. After 2 1/2 yrs later, balance is much better. I am back to work as a hairdresser. Use of hand is so much better but neuropathy pains in feet still hurt EVERY day. I even tried Gabepentin 300mg 3x a day, quit that because didn’t ease the pain. Overall I continue with my everyday activities just fine but like I said the neuropathy pain in feet is very aggravating.