CIDP Variant?

    • Anonymous
      August 10, 2010 at 10:44 pm

      I was diagnosed with CIDP in April. My symptoms are mainly pain in my legs and feet, and to a lesser extent numbness in my feet. I also get some pain in my arms and hands. The pain and numbness are much worse on my left side. I have no weakness, but I do sometimes suffer with mild hand tremors. Has anyone experienced or heard of similar symptoms? I have been told my symptoms being much worse on one side is unusual in CIDP, and I am wondering if I might suffer from a variant.

    • Anonymous
      August 10, 2010 at 11:42 pm

      I also have CIDP and have pain in my hands and feet. I also have worse pain on my left side, especially my left foot. I told my neuro and he didn’t seem to think it was unusual. With CIDP, alot of people have different symptoms. Some have a lot of weakness and in wheelchairs, others have no weakness (I have not loss weakness either, but have pain), some have pain and some don’t, etc, etc. CIDP is a very complicated disease with different symptoms for people. Hope you find relief for your pain.

      Clare in Michigan

    • Anonymous
      August 11, 2010 at 8:41 am

      Although I have symptoms on both sides, my left is markedly worse, especially the weakness. I get all the symptoms you listed, in addition to weakness.

    • Anonymous
      August 11, 2010 at 12:33 pm

      Are the discs in your spine in perfect condition? Because if you have a few that give you probs, then extra stress will be placed on that side of your body, which could account for more pain on one side. Also, do you have any other pre-existing injuries, old sprained ankle, knee joint, fallen arch in foot, shoulder sprain; old injuries will add more stress to the GBS condition.

    • Anonymous
      August 11, 2010 at 1:26 pm

      Wow. At times I think I am all alone with this disease, and then I realize others suffer just like me. In a way it’s comforting, but it also seems such a shame that so many have to go through this. Everyone here is so helpful. It’s great to have a place to ask my questions and post my concerns. God bless you all.

    • August 11, 2010 at 1:29 pm

      Hi there,

      It sounds like you have a similar variant to my husband. His diagnosis was not CIDP but post viral small fibre neuropathy. The main symptoms are nerve pain in the arms, legs and especially feet and some cranial involvement. He has some weakness but the EMG and nerve conduction tests are always negative.

      What symptoms led to the diagnosis of CIDP? In Canada they do not call it CIDP unnless there is large fibre motor nerve involvemnet. Consequetly there is no IVIG treatment provided….

      Kathy from Ottawa, ON

    • Anonymous
      August 11, 2010 at 2:41 pm

      Kathy, I have heard that if the pain is really intense, that usually indicates small fiber neuropathy. I don’t doubt that I have small fiber involvement, but my EMG/NCV was markedly abnormal, indicating significant large fiber demyelinization as well.

    • Anonymous
      August 11, 2010 at 3:16 pm

      I have no pain, but am markedly weaker on left side (foot and hand) than right side. I have severe left food drop and tremors in my left hand that come and go. I also have sensory involvement which are about the same in my lower limbs. My neuro calls this the multi-focal or Lewis-Sumner variant.

      Several weeks ago I was passing a glass of wine to my daughter and my hand started shaking as if I had Parkinsons’s…to which my daughter stated, “Thanks, but I prefer my stirred, not shaken.” Pretty clever. I’m still getting lots of mileage out of that!


    • Anonymous
      August 11, 2010 at 3:17 pm

      Er…that’s foot drop. Though food drop works too.


    • Anonymous
      August 11, 2010 at 3:18 pm

      Sharon, That made me laugh…good to keep a sense of humor! Your daughter is quick thinking on her feet. 🙂

    • Anonymous
      August 11, 2010 at 3:46 pm

      I too have many more symptoms on my left side. My left hand tremors, left hip is much weaker, left knee gives out quicker, and the pain I experience in the left foot is much more intense

      Maybe someone should research this common thread

    • Anonymous
      August 11, 2010 at 10:16 pm

      It seems more than coincidental that we all have markedly worse symptoms on the left side. I can’t think of any anatomical difference that might account for it. Perhaps it is a distinct variant. We may be onto something. I will make a point to discuss this with my neurologist at my next appointment in October.

    • Anonymous
      August 16, 2010 at 5:26 pm

      I find that since finally being diagnosed that I am having more trouble with sciatic pain on the left while the right foot hurts terrible. My right hand shakes when I go to pick up something as well. My writing can be fine some days and just plain indescribable the next. I also have trouble w/ my swallowing. Each week it seems like something new.

    • Anonymous
      September 28, 2010 at 1:27 pm

      Hi all! My husband has had a variation of this disorder since 2002. In 2005 we went to see Gareth Parry and found out he had an even rarer variant of GBS/CIDP that involved small and large fiber neuropathy. Back then…. (in the good ole days) there was no formal name and the doc called it “chronic inflammatory demyleniating/axonal, sensory/motor, small and large fiber neuropathy” yeah….. soooo my question is , for those who have this variant have they given it a “name” yet? My husband is maxed out on meds, kicked off the IVIG list a long time ago due to “lack of research of specific disorder” lol. We take it day by day and any new symptoms are sent to doc but always in the back of your mind you wanna give it a name………

      You have to live every moment to the fullest with any disorder. When our baby (of 5 boys) graduated school, we got rid of the house bought a 5th wheel camper and are seeing the US on our terms. No regrets! Thats the idea…. no regrets!

    • Anonymous
      September 28, 2010 at 6:15 pm

      ScrAppy. Mine is a variant as well. Cidp/madam/????
      Left is worse than right in my legs however my right arm is worse than the left and I now have some face drop on my right. Tremors in my left chest calf muscles on right and left no longer function ing and foot drop way more severe on left. Pain is more severe on left and tremors are worse on left. My neurologist has no name just that it is now in both peripheral and central nervous system. That is why the aggressive treatments. No name just same symptoms.

    • Anonymous
      September 29, 2010 at 12:25 am

      I was diagnosed a year ago with CIDP, and it has been almost entirely on my
      right side, with no pain, until the last two months. The symptoms have been
      foot slapping, and drop foot, and the progress has been quite slow, and per-
      haps stopping for periods of time. I have not responded to the intravenous
      gammaglobulin after 7 sessions. I have pain in my lower right leg at night,
      just enough to keep me from sleeping, and the normal pain medications do
      not work very well, so far. As soon as I sit up, the pain goes away, but I
      can’t get enough sleep, as I wake up after every hour or two with pain, a-
      gain. I don’t have pain in the day time. Very recently, my right knee buckled
      and I fell backward, without getting hurt. It happened a second time, but
      I didn’t fall. The third time, both knees gave out, while I was holding onto
      a shopping cart at the end of shopping, as I was headed out the door. I
      wonder, if anyone else experiences that buckleing of the knees without any
      warning. For a few hours afterward, the knee feels spongey, but there is no
      pain. It’s hard for me to determine, if my symptoms are normal for CIDP, or
      if something else is going on. I have a medical appointment next week to
      try and sort this out. I use a brace on the left foot to keep it from dragging,
      and a cane for balance, which is the main problem. I also get burning pain
      in the toes, that comes and goes over long periods of time, sharp stabbing
      pains, usually in the arms, that are brief, and dull aching pain in the right
      leg, that radiates, and comes mostly at night. Are all of these common
      symptoms of CIDP? I don’t get a lot of feedback from doctors, as they don’t
      seem to know much about the symptoms.

    • Anonymous
      September 29, 2010 at 12:41 am

      [QUOTE=jasonscamera]I too have many more symptoms on my left side. My left hand tremors, left hip is much weaker, left knee gives out quicker, and the pain I experience in the left foot is much more intense

      Maybe someone should research this common thread[/QUOTE]

      I have more symptoms on the right side, and I was interested in your com-
      ment about your knee giving out. About ten days ago, my right knee buc-
      kled, and I landed on my rear. A few days later, it happened again, but I
      didn’t fall. Today, both knees buckled, while I was leaving the grocery store,
      and the cart kept me from falling. When you said, your knee gives out, is it
      a weaknes, or does it suddenly collapse, where you can’t recover. The only
      symptom I have ever had in my left foot is foot slapping, and basicly, I have
      no trouble with the left leg, until recently, when it seems to tire easily, and
      then, today, with the knee buckling. There is no warning for me, when the
      knee buckles. Is your knee problem, something you have had for a long time,
      and is it a classic symptom of CIDP? I’m 71, and I have great difficulty figur-
      ing out, if my symptoms are from CIDP, or if other problems are happening.
      I use a cane for balance, and have a brace to keep the right foot from drag-
      ging. My doctors don’t seem to have much specific information to give me
      about symptoms. They say maybe, or probably, but don’t seem to really know. One neurologist said, that pain is not usually associated with my con-
      dition, yet I hear of so many people with it, who have serious pain. I have
      pain in the right leg at night, that is mild, but keeps me from sleeping. No
      one can tell me, what is causing the pain.