Early Signs of CIDP

    • Anonymous
      May 10, 2007 at 2:46 am

      Hello everyone and thank God for the site and the wonderful people on it! Again, I am new to this site and the diagnosis of CIDP and just have lots of questions. Here’s a new one: What are the very earliest symptoms of CIDP? For several years before my diagnosis I was so fatiqued that even activities like going to the mall or taking care of my grandchildren were just too much for me. I have suffered from chronic pain (herniated discs in back and neck) for years now, so just attributed the fatique to that. Then, I read on this site of some of the fatique that other site members have posted and just would like to know what the earliest symptoms are and how long do they last before you see the classic signs of GBS/CIDP. I’ve read that low back and buttock pain are sometimes the first symptoms of GBS…..boy I’ve had that for a good two years.

      Thank you all for your help.

      Sheila in WV
      GBS 02/07
      CIDP 05/07

    • Anonymous
      May 10, 2007 at 4:32 am

      Sheila C.I.D.P. is a peripheral poly-neuropathy, whilst it is true that fatigue and back pain may be seen early in the illness it would be unusual, if not impossible, without some other feature of poly-neuropathy such as numbness, tingling or persistent muscle weakness. I think for back pain to be the presenting feature years before signs of neuropathy would be impossible. After all you already have disc lesions and these are very muich more common than neuropathy, so there is no reason why a person with disc lesions should not develop some other unrelated dIsorder such as C.I.D.P.
      I hope you make a rapid recovery. DocDavid

    • Anonymous
      May 10, 2007 at 9:33 am

      Hello Sheila,
      Welcome to your new family, where we feel what you feel. You’ll probably get a different answer from each one of us because we are like beautiful snowflakes, no two is the same. My very first sign of CIDP was a tingling in my fingertips, which I didn’t pay serious attention to because my thyroid condition could do this, so to me it wasn’t unusual. Then my feet became numb, thyroid didn’t do that. Slowly, my legs became very weak and I was like a clock running down. I paid attention to this and to the fact that I was numb in a place you normally don’t get numb.

      Fatigue is a very big part of CIDP, because of my fatigue, I do things slow and I do things in spurts and when I have the energy. But, since my thyroid condition used to cause serious fatigue, I only know which is which when my thyroid is under control.

    • Anonymous
      May 10, 2007 at 10:27 am

      My daughter’s first symptoms were pain in her arms, hands & fingers. Then came the foot pain & around the same time the lower back pain started. She was only 4 at the time so it’s really hard to be certain what the progression really was.

      No 2 people’s symptoms present the same exact way. And even if 2 people do have, say, pain in their feet first, that doesn’t mean that the same treatment regimine will work for both.

      It’s bizarre & fascinating at the same time how this disease works. You’ll learn more about YOUR disease as times goes by & then you’ll see how it compares to others. While everyone has basically the same aches & pains it is still so different.

      Codystanley – I think we need to make t-shirts that say something like “GBS/CIDP Foundation, Where we feel what you feel”. I think that should be the new foundation motto actually. What is the foundation motto by the way? Any one know?


    • Anonymous
      May 10, 2007 at 11:26 am

      Mine came on a day after a jog in the park i awoke and my feet and ankles had slight weakness only to progress almost 11 years later to 90% paralysis in my feet and ankles. Very hard to work but still working as an appartment painter (sometimes i wonder how).

      Of course our neurologist’s tests i.e. MRI, NCV/EMG and Spinal Fluid Protein Count test etc….

    • Anonymous
      May 10, 2007 at 11:51 am

      Welcome. Sorry to hear that you have CIDP. As the previous posters have said, it’s different for everyone. Mine is relapsing/remitting type and came on in a “classic” presentation of gradually increasing weakness. It started in legs (noticed that stairs were a bit harder to climb) and hands (had trouble pumping the hair spray bottle). Luckily, pain has not been an issue for me. The weakness, however, eventually became really bad so I got all the tests, was diagnosed, and started IVIG last July. It has been a miracle for me. My strength is totally normal as long as I keep getting infused.

      Other symptoms that emerged over time was partial numbness in feet, occasional shooting pains (always had these but I get them more now, especially in my feet/toes), “burning” feeling in soles of feet, muscle twitches, and hand tremor. The tremor didn’t start until after IVIG, so I’m not sure if it’s from the drug or the disease. Fatigue is an issue for me, but it was not an early symptom. More so the effect of overcoming the weakness to go about daily activities, and now it varies. We just have to be careful not to overdo things and rest when needed (the laundry will still be there tomorrow ;))!

      Take care,

    • Anonymous
      May 11, 2007 at 5:08 pm

      My first symptom was numbness in the bottom of my feet. It moved on to numbness in my hands, weakness in my legs and weakness in my hands. Fatigue is a part of life now but not a big part. It takes me longer to clean house on the weekends. I clean a while then take a break and snuggle with my puppy. Then clean some more and snuggle some more. Actually I enjoy cleaning house more this way! 😀
      I like the snowflake/t- shirt idea too!

    • Anonymous
      May 11, 2007 at 6:56 pm

      [FONT=”Century Gothic”][FONT=”Comic Sans MS”][SIZE=”2″]As we all know it is different for everyone, in my case it first began as strange muscle twitching in my legs and abdomen which was gradually accompanied by pins and needles feelings (like you feel when your leg goes to sleep) and ice-pick shooting pains in my legs, then increasing numbness in my feet and up into my calves; from my first symptoms to diagnosis was about five years. It took that long to diagnose because I also had severe back problems and the doctor believed that was all that was wrong… that is until he himself suffered a very severe episode of GBS and it just happened that my next follow up appointment with him was only a few weeks after he had recovered enough to return to work… he sent me to a great local neurologist who gave me the initial dx and he then sent me to Dr. Shinn Oh at UAB for a confirming 2nd opinion and the rest is history…

    • Anonymous
      May 12, 2007 at 7:25 pm

      My first sign was slight numbness in the toes six years ago. I didn’t pay much attention to it until it got worse after a year. I have a variant of CIDP which progresses very slowly and is primarily sensory. Six years later, however, motor nerves are getting affected also resulting in some weakness in feet and hands. Today my feet are totally numb and my hands are getting numb also. No pain.

    • Anonymous
      May 14, 2007 at 7:01 am

      Hi Shelia,
      I have CIDP and my first symptom that I can remember was 2 numb toes – this was about 8 years ago. Around the same time I noticed my walking became slower and it was hard to keep pace with anyone that I was walking with. Since then I’ve had relapses (attacks) and periods of recovering from those attacks, though recently my Neuro told me that the CIDP is now progressive. My lower legs are pretty much numb now, interestingly I noticed the hair on my legs were the numbness is – has fallen out! Not a bad thing for a female who hates shaving – that is if I could bend down to reach my legs!
      Best wishes

    • Anonymous
      May 14, 2007 at 11:33 am

      The first symptom I remember was pain in my feet about 7 yrs ago. There may have been some numbness, but I don’t remember it until the neurologist tested for pin sensitivity. Later, I started feeling burning on my shins, and the foot pain got worse. I started feeling the electrical activity in my legs around the same time. I was still able to walk through the pain, and walked 2-3 miles every day. I hiked, with a local outdoors group, 5 miles on Sundays. On one hike about 5 yrs ago I first felt the cramping in my left calf. Before long, I felt similar pain in my right calf, any time I tried walking. Before long, the pain got severe enough to keep me from walking more than a block or two. Now, I have cramping in my calves and thighs, most of the time, not just on activity as before. Most recently, I began experiencing severe fatigue, and feel like I’m fighting sleep all day. I’m also feeling some numbness in my fingers and pain in my hands.
      I’m still working full time, but if the fatigue continues to get worse, or my hands get worse and typing becomes difficult, I may have to go on disability.

    • Anonymous
      May 14, 2007 at 4:15 pm

      :rolleyes: Yep.Been at it nearly 7 yrs now!I do have a good muskoskeletal neurologist,though.He’s been eliminating diseases so that he can get to the diagnosis.I think we’re about there.When I saw him in March and April,The L-spine MRI results showed herniated disc and lumbar stenosis,and I’d had an episode with the sural nerve in my foot that interested him.My next appt is June 28th.I started seeing him because of being epileptic,but about the same time,I started developing vision problems,cognition problems,pins&needles feelings in my feet and hands.Yet,my symptoms were very mild at the time.It would take time and observation.There was a remission from Nov 2003-Jan2005.It’s been progressive since it came back.I can no longer climb or descend stairs;nor walk very far.I fatigue easily.I just spent a few days down in bed with a bout with inflammation.I’m so weak that I feel like a puppet without strings,and all I want to do is sleep! 😮