How do you explain CIDP

    • Anonymous
      September 20, 2008 at 12:30 pm

      How do you guys explain CIDP to others ?

      How do I tell the moms of the kids Connor has a play date with that I cant walk the kids home even tho they are two blocks away ? I can say I have CIDP but what is the best way to make someone understand …briefly.

      We live a few blocks from school and many his new friends are within those same few blocks.


      have a great weekend everyone !


    • September 20, 2008 at 1:54 pm

      this is the way I describe it. Kevin has an overactive immune system that attacks his nerves. Lot’s of people have overactive immune systems, people with diabetes have an overactive immune system that attacks their kidneys, people with exczema have an overactive immune system that attacks their skin. People with allergies have an overactive immune system that attacks, sinus’s. skin, etc. By this time, people get the clue that it is no threat to them (cidp) and that lots of people have over active immune systems.

      Then I explain how it works on Kevin physically. I say the nerves are like an orange electrical chord. The orange part being the myelin sheath, and the nerves being the wires inside the chord, protected by the myelin or the orange covering. I explain that the attack eats at the orange chord or myelin and then to the nerves if not caught soon enough. I explain that KEvin’s nerves do not get the message from the brain to send to the muscles and that is why his legs or hands could not work, because they were not getting the message. Then I go into the ivig acting like a barrier on top of the sheath or chord, and the attack happens to the ivig. (simple explanation of the function of ivig, not including the modulating proponent or allowing antibodies to overpower the autoantibodies.) Most people kind of get it by then. Hope you can use something from this.
      Dawn Kevies mom

    • Anonymous
      September 20, 2008 at 2:29 pm

      “I have a cousin of MS that attacked my legs and arms so I can’t walk far or well but I’m still a pretty cool mom anyway.” 😀

    • Anonymous
      September 20, 2008 at 9:08 pm

      [QUOTE=Julie]”I have a cousin of MS that attacked my legs and arms so I can’t walk far or well but I’m still a pretty cool mom anyway.” :D[/QUOTE]
      Way to go Julie! That’s what I have been saying when asked about my wife. It seems they have seen the MS kids and have a handle that’s it’s bad. So to relate it to that is something they grasp.

    • Anonymous
      September 20, 2008 at 11:18 pm

      Dawn, sometimes it seems like I lose people about half way thru the electrical cord story.

      I have said it’s like MS before…I didnt say” but I’m still a cool mom…”
      Julie, I’ll be sure to throw that in…..thanks !!!:p

    • Anonymous
      September 21, 2008 at 8:16 am

      Good morning, Stacey,
      Yeah- that’s what I say, and people seem to understand right away.
      “It’s a sister disease to MS. MS hits the Central Nervous System, and CIDP hits the Peripheral Nerves.” They seem to get it right away, since most people know what MS is, because 1 in 700 people have it.

    • Anonymous
      September 21, 2008 at 11:21 am

      I have to agree with the others here also. It does mimic MS. At least mine has. Really frustrating too!

    • Anonymous
      September 21, 2008 at 4:45 pm

      But I have to admit that Julie? Your explanation has worked the best for me with both relatives and with doctors.
      I found this out when I’d sent copies of the NIH explanation of CIDP to family members to try and give them an IDEA of what was going on.
      The key word was ‘demeyelination’. A family member’s spouse has MS and asked specifically about this part-I explained that yes I have ‘d-m’ but not in the brain as with MS, but at the extremeties. The pain of it all was grasped immediately. And that it could be serious too.
      To many new doctors I have the luck to see for various reasons the MS/d-m/extemeties explanation has been the fastest way to refresh them on ‘nerves course #101’. It’s especially important for any anathesias given for any procedues as MS-er’s often react badly to many anathesias. This has saved me a great deal of possible added new side effects from surgeries and such.
      And, we all experience doctors who have short attention spans.
      As for normal folks? The MS ‘cousin’ description is good as it gives people a very good clue that this is a ‘NOT GOOD’ condition, but not catching.
      It’s frustrating, but it comes with the territory I guess.

    • Anonymous
      September 21, 2008 at 6:15 pm

      Hi Stacey,
      Sometimes I use an electical cord to explain what happened to me, but I don’t get too detailed because people who never heard of CIDP will be lost. Almost all people have a TV, so I tell them the brain (I use brain because little children may not understand the nervous system) is the TV set and when the cord is plugged into the wall outlet, it works. But if you cut the cord, it doesn’t work anymore even though the TV is still there and hasn’t been damaged.

      Most of the time though, I just tell people that what I have is like MS. The majority of people know what MS is.

    • Anonymous
      September 22, 2008 at 8:07 am

      I think Dawns explanation is good if people REALLy want to know…otherwise, comparing it to MS, I’d have to agree is more simple. Especially to the other moms at school.

      I think my hubby understands…I KNOW he understands that I need rest and he is wonderful to me about it all. This weekend I spent alot of time in the kitchen…made lasagne and cleaned, etc…I was on my feet for a few hours and barefoot. Holy cow…I could hardly walk later. Something about being barefoot. I can hardly walk barefoot b/c of weakness but if I’m just in the kitchen or about the house, I can do ok. But the pain that came afterwards was like walking on broken glass. OUCH. why is that !

      My sisters still dont understand and, well, maybe the oldest one doesnt really want to. But the other… think she tries and I know she cares usually. I heard her tell someone I have “delapitating” neuropathy. Anyone ever heard of delapitating ?!


      have a good week my friends.


    • Anonymous
      September 22, 2008 at 8:34 am

      Hi Stacey,
      I can only tolerate standing on bare feet for less then two minutes. It’s a difficult sensation to describe, but the closest I can come is to say that it’s like I’m walking on a rocky beach. I cannot stand up in the shower or stand on a wet floor, again it’s difficult to describe, but on a wet floor it’s like I have no traction.

      I have no idea why this is part of a neuropathy.

    • Anonymous
      September 22, 2008 at 11:46 am

      Hi Stacey-the only thing that is delapidating in my life is my car:D

      Ask sis what she means by that and you might get an interesting answer.
      Thanks Julie for your answer. My friends don’t quite get it with the electrical cord, so I am going to try your answer with the MS. Everyone is right, everyone seems to know about MS.

      Take care Stacey

    • Anonymous
      September 22, 2008 at 1:48 pm

      My wife’s doctor said exactly what you guys described when she asked him about the pebbles she felt. He said it is a CIDP thing and while some feel sand, others pebbles, and still others glass. I’m glad hers are pebbles.

    • Anonymous
      September 23, 2008 at 12:58 am

      I’ve shortened my explanation to this:

      “Emily has a rare autoimmune disease. It’s not contagious. Her immune system got confused & has decided to attack her nerves – it causes her a lot of pain & basically it paralyzed her. There are treatments for it & she’s ok now.”

      It’s too complicated to give the long version of the explanation over & over again.


    • Anonymous
      September 28, 2008 at 5:25 am

      It is really hard because people ask, but don’t want a long explanation.

      Sometimes I just say “the nerves in my legs are messed up bad and don’t work right. It is like walking on bare wires shorting out all the time” They see me hobbling and decide they don’t want what I have and they smile and we each go our own ways.

      To others I do use the MS comparison, but I add the fact of MS working on the cNS while CIDP is peripheral.

      I use the electrical wire one when someone has a little interest and we have a couple of minutes.

      I also try to watch them and shut up as soon as they look like they don’t want to hear any more about it. I have, at times, been quite detailed with some folks. They have seemed to want to hear more about it.

      But most folks want a brief short reply and to move on to other topics, like the weather.

      So, tailor your response to the listener. That is my best advise