Why does CIDP (even the sensory form) cause such profound weakness?

    • Anonymous
      February 13, 2008 at 1:59 am

      Hi fellow CIDPers,
      Could anyone explain why the sensory form of CIDP causes weakness just like the motor form of CIDP? (well, it does with me)
      I do have some motor and autonomic nerves affected but it’s the sensory system thats worse affected. The dreaded fatigue (which you all know about) can stop me in my tracks!
      Also, are absent reflexes a sign of motor involvement?
      Any info, greatly appreciated.
      Kazza 🙂

    • Anonymous
      February 13, 2008 at 2:15 am

      My best guess as to why sensory nerves are affected the same as motor nerves is because demyelination occurs on both sets of nerves. It’s not just your motor nerves that are being attacked but all of your nerves are susceptible to demyelination.

      I think, to the bad CIDP anti-bodies, a nerve is a nerve is a nerve & they (the bad anti-bodies) will go after any & all myelin in your peripheral nervous system. The autonomic nervous system is part of the peripheral nervous system so it’s up for grabs.

      I believe that absent or diminished reflexes would indicate some motor involvement. Usually your reflexes are one of the first things to go when the onset of CIDP occurs.

      Hope that helps.

    • Anonymous
      February 13, 2008 at 2:16 am

      Kazza, I have sensory and motor issues. My reflexes have been absent for many years, even before my actual paralysis started. It is motor involvement. It can be tested with the emg/ncv. Fatigue is a daily struggle for me as well, no matter how much I rest, it is still there. Take care.

    • Anonymous
      February 14, 2008 at 4:12 am

      Thanks for your replies.
      Yes, my reflexes have been absent for about 4 or 5 years after an attack. I’m due for another NCT in March…
      Thanks again
      Kazza 🙂

    • Anonymous
      February 16, 2008 at 5:05 pm

      [COLOR=black]My neurologist and I were discussing reflexes. He said that a lack of reflexes is more sensory than motor. I am not sure I agree completely, but his argument makes sense.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]It might be helpful to review how a reflex occurs:[/COLOR][COLOR=black][/COLOR]
      [COLOR=black]a stimulus is received by the nerve endings, [/COLOR][COLOR=black][/COLOR]
      [COLOR=black]the signal travels to the spinal cord,[/COLOR][COLOR=black][/COLOR]
      [COLOR=black]the spinal cord reroutes the signal to a different set of nerves,[/COLOR][COLOR=black][/COLOR]
      [COLOR=black]the signal travels back, and[/COLOR][COLOR=black][/COLOR]
      [COLOR=black]the resulting response happens.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]My neurologist’s argument was that a missing reflex was a result of the stimulus not getting to the spinal cord; in other words, the sensory nerves were the main culprits. Still, if any of these steps is slow or absent, then the reflex will be slow, weak, or missing. But to answer your question, poor reflexes does not have to imply motor involvement.[/COLOR][COLOR=black][/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]As to the question about predominantly sensory CIDP causing weakness, it could be what Kelly said, that both sets are demyelinated. Another possibility is that the sensory nerve demyelination has led to inflammation. Still, why should an inflamed sensory nerve affect the motor nerves? Part of the reason is that the nerves are distributed in bundles. If one or several nerves in the bundle are inflamed, the others are likely to be affected by the products and results of the inflammation, perhaps severely enough to have clinical presentation. Part of the reason that prednisone, Ig, and plasmapheresis can work so quickly is that they all help to reduce inflammation.[/COLOR]

    • Anonymous
      February 17, 2008 at 5:55 pm

      Mark, you are on the ball, and on point. The only thing I might add here is to remember that you do not need total muscular failure to be affected. What I mean is that muscles have many fibers which are fed by nerves. If you have 25% of the fibers affected, the muscle will still work, but it;s overall function will be diminished. If too few fibers do too much work fatigue comes faster and recovery takes longer.

      The other point someone made is that in some CIDP’ers whose losses are slow and spaced out, it is difficult to notice how bad things get until you are in the middle of it. Like walking up steps that you had not done for a year. Boom!, here you are halfway up and dead tired. Or walking the dog. You used to make say four blocks, and now it is only 2. And then you feel tired for a whole day or so.

      I think the “sensory form” starts out predominantly sensory, but the losses are muscular as well. Just not as noticeable. My nerve biopsy in 2000 showed muscular demyelination and remyelination, but it was not physically noticed by me in my life. Later on, as I lost more and more muscle function, it bacame very noticeable, and now I struggle.

      Dick S

    • Anonymous
      February 18, 2008 at 2:45 am

      Thanks guys for your info. Everything everyone has said makes so much sense! I always intend to ask my Neuro these questions, but when it comes to my 6 monthly checkup, there’s always others things to discuss – even though they are on my list of “to ask Neuro” questions!
      My CIDP is slowly progressive – so my Neuro has told me. He also said my form is quite rare – The areas worse affected being the dorsal root ganglions.(not sure if ganglion is the plural or if ganglia is??)
      Thanks again,

    • Anonymous
      February 18, 2008 at 4:23 am

      Hi Kazza, am keen to learn about the progressive type. do you mind (or anyone else out there for that matter with similar experience)telling me how your neuro came to this diagnosis and how you have felt the progression.?
      Did he give you any indication as to what lies ahead for you and how you will deal with this ie more intense treatment, or stronger treatment options etc??
      Thanks very much
      Kiwi chick
      Fellow CIDPer relatively new to the scene, diagnoised 07.
      Not sure if am relapsing/remitting type or progressive.

    • Anonymous
      February 18, 2008 at 5:19 am

      Hi Kiwi Chick,
      I started off with two numb toes about 8 years ago. I also noticed around the same time I was becoming slower when walking. Then about 5/6 years ago I started having mild attacks for several months, followed by a more severe attack. The last couple of years, I haven’t really recovered, (but can’t say I have had an attack as such) and am slowly noticing the altered sensation in my legs is higher than it was after my last bad attack. For example, the numbness, altered sensation would stop at my knees, now sometimes it’s just above my knees. My hands and face are now starting to burn as well, whereas before they weren’t. These sensations are always worse when I overdo things though, but you probably know that yourself. So no drastic changes as experienced in an attack – but enough to let you know that something is going on.
      I think I may have had a relapsing type before and now a more slowly progressive type as my Neuro thinks I have.
      IVIG is the choice of treatment at the moment for me.
      Best wishes,

    • Anonymous
      February 19, 2008 at 5:17 am

      wow that does really sound like such slow developing progression, it seem hard to imagine in a way. I felt my progression over a 2 -3 week time frame with arm weakness and then leg weakness as they gave way on me as i was crossing the road taking kids t school etc. ended up in ER etc and treated immediately with 5 day ivig but relapased 12 days after getting home. this pattern continued with each relapse taken me to new levels of dependance until finally ws fully paralysed (resp function remained thankfully) but am now on ivig twice weekly, iv methylpred weekly and azathiaprine twice daily. the last 6 weeks we tried ivig once a week but i deteriorated so am back to twice weekly ivig and finger crossed i make progress again.
      Good luck and thanks for sharing your experiences. am not sure what so called category i fit into ie relapsing or progressive.
      all the best
      kiwi chick

    • Anonymous
      February 19, 2008 at 6:14 pm

      Hi Kiwi chick,
      Sorry you have been having a bad time. I was pretty bad in the beginning but now thankfully – as long as I don’t do too much – I can manage. I had a hard time getting a diagnosis at first, My Neuro thought it was MS (I had a few spots on my brain MRI) So I was in limbo for a couple of years. The CIDP affected my cranial nerves and autonomic system as well as the nerves in my legs. I can now smile, but my eyes find it soo difficult to look up and I still have bouts of double vision. When I have really overdone things – my swallowing difficulty comes back as well – and then it feels hard to breath – yuk!
      I can’t talk for long anymore either (voice fades) and I find chewing food is a real chore – I could never eat a steak – it would wear me out. But, all of these things (and other things) have been around since my first attack – and are always affected to a degree by how weak I am feeling and if I have been overdoing things – So, only the sensory stuff seems to be slowly progressing.
      I hope your CIDP stabilizes soon – and remember to take things easy – I know that is easier said than done when you have a family to take care of!
      Best wishes,

    • Anonymous
      April 2, 2008 at 3:45 am

      Greetings Kazza

      Sensory CIDP seems to be fairly insidious (sp)…I do reckon that there is a fair degree of inflammation involved. If the literal definition of CIDP is taken, your nerves are continually being demylinated and then trying to remylinate as inflammation levels rise and fall. I am taking ALA supplements and fish oil to try and reduce the amount of inflammation in my body.

      I have no vibration sense in my toes, and only moderate on my ankle bone. My reflexes are absent. The altered sensation is in my hands, feet and legs up to my knees. My face and lips became involved about 6 months ago.

      Things progress very slowly, and yet, as you say, you know when something has changed. I had a very bad year from pain and depression, and was pretty absent from life; lost 20kgs, all my muscle tone…but I am over it now. We did plasmapheresis, and that kind of turned the corner for me. We have had to go back to IVIg 2 days/month, and lots of meds, but we have restabilised.

      Lately, I have been having trouble with stomach and bowel — and now my question for you and anyone else who might be able to help — what were the symptoms that made your neuro sit up and take notice with respect to autonomic involvement? What are the implications with respect to treatment?

      Thanks alot and good to be back.

      Thanks for any assistance

    • Anonymous
      April 2, 2008 at 4:18 am


      By definition CIDP is a peripheral neuropathy. Supposedly it has no autonomic component. The method of attack is autoimmune to the myelin sheath supporting peripheral sensory nerves and muscular nerves, all peripherally.

      That is not to say that you don’t have a slightly different variant that affects autonomic functions.

      It is easy to lump things together. The challenge is that some people who aren’t as knowledgeable also begin to think that all of their problems stem from CIDP. I know I did in the beginning. I now realize what does what.

      If is even frustrating that I switched neuro’s and have to educate him somewhat. He wants to bunch together my tinnitus and headaches to my CIDP.

      Take care
      Dick S

    • Anonymous
      April 2, 2008 at 4:39 am

      Thanks…I think that you are right; there is a temptation to assume that all stems from the original issue.

      I think, though, that when specialists aren’t 100% convinced of their diagnosis, i.e. when certain symptoms are not in the “usual presentation”, then they ask questions that lead down a certain path.

      Alot of our discussions lately seem to have been of the “whether there is motor involvement”, due to my propioception problems, which I understand is not normally related to a small fibre neuropathy (of the dorsal root ganglion). These also lead on to questions about eating, digestion, etc. which might indicate autonomic problems.

      While I am aware that some people have autonomic involvement with CIDP, I also know it is very unusual. The problem is, I usually end up in the “unusual” basket! :rolleyes:

      We will keep moving forward!

    • Anonymous
      April 2, 2008 at 4:56 am


      Proprioception.. You can’t feel where your feet are, or where your hands are etc. from time to time? Yes, I too lose track of whether my legs are crossed, or if my feet are here or there. It is quite disconcerting at times.

      There may also be a variant of the usual CIDP that has these types of involvements, but they are the exception rather than the rule.

      It is hard on a forum like this to deal with so many variants (and there are) when most people come looking for answers for the “normal” CIDP, which is rare enough so as it is. I try to limit confusion to “newbies” and stay within the normal parameters. It is too easy to confuse them when they are looking for the most basic advise.

      I try my best to share mainstream ideas are theories as much as possible and give them a clear unsugared view of what they are looking at. If you read a lot of posts, many still seem to think there will be a miracle cure for CIDP in the near future. There won’t. People need to learn how to deal with it, live with it, and learn how to limit it’s effect on their lives. And they CAN do that.

      (Sorry, I got on my soapbox, and it is way too late/early)

      Have a good night. I am to bed.

      Dick S

    • Anonymous
      April 2, 2008 at 6:04 am

      Hi Debs,
      The main symptom of mine I’d say of autonomic involvement is my slowed stomach emptying time. I also have gastric reflux which of course is made worse by the fact that food sits in my stomach for ages. I have medication to take which speeds up the emptying time – when it really plays up, as the nausea can be quite disabling.
      Sometimes when my CIDP is playing up (and I am feeling numbish) – it is harder to tell when I need to pass urine – I just can’t feel my bladder that well.
      I read that the autonomic system is part of the peripheral nervous system.
      Debs, you are not alone – I am in the unusual basket as well!
      Best wishes,
      Kazza (CIDP)

    • Anonymous
      April 2, 2008 at 8:02 am

      The unusual basket here seems to just keep growing.

      I am amazed at how you all can make me understand this monster way better than my dr.
      My dr seems to be shying away from telling me if I am slowly progressive or if the damage that seems to progress is old damage from a prior attack.
      Sure wish he’d try to help me figure it out rather than wait. But, maybe that’s what I’m suppose to do. Wait for it to get worse. If it doesnt then I’m burned out. If it does, I’m slowly progressive. Awful afraid, I already know the answer here.


    • Anonymous
      April 2, 2008 at 2:14 pm


      Autonomic and peripheral nervous systems are different in the way they function and how they are treated.

      Peripheral nervous ayatem is legs, arms, extremiries, things you consciously move.

      Heart, lungs, digestion, kidney function, etc are autonomic, that is you don’t have to think to make it work.

      CIDP is a peripheral neuropathy. There may be a variant that has an autonomic aspect to it, I am not familiar with it.

    • Anonymous
      April 2, 2008 at 6:49 pm

      Hi all… I have been lax in reading from the group lately… This is a fascinating topic… I had an appoint with my neuro but it was cancelled in Feb and rescheduled for March… I went in Monday, but although they showed the cancelation of the Feb appointment they did not have me down for one at all… I made a new one in April…two more weeks…
      I notice that I am getting weaker too, but I cannot tell if it is because I tire so easily or if I am not doing enough and thus getting weaker… My nerves were (last fall) supposedly healed by some 90% or so… But I remember reading that when they heal there are gaps… I have so many questions, if only I could get in to ask them…
      Thanks to all… Keep posting…

    • Anonymous
      April 2, 2008 at 10:27 pm

      hey Guys,
      I’ve lost my sense of propreoception as well.
      It’s maddening and my doctors have all told
      me to take good care of my eyesight sand not get
      over tired. I use night lights at home all the time.
      They test me and I think I can feel, but if I can’t see
      it I can’t really feel it and I tend to drop things in the dark.
      When I’m tired is the times I have my worst spills
      as well.