Criteria??

    • Anonymous
      March 6, 2010 at 3:34 pm

      I read on the web the other day, a statement about GBS which said, (paraphrasing) “the most common cause of rapid onset paralysis”.

      So, that raised a flag…and makes me want to ask a question: Of those here, that HAVE a diagnosis of CIP/CIDP, how many have had a complete or total paralysis of at least one part of their bodies, whether it has persisted or “faded”?

      My thought is that if this IS a diagnostic criteria, then it’s no wonder why I’m having trouble getting a diagnosis. While I have many neuropathic symptoms, I have NOT had any complete or total paralyses of any region. If this is a criteria, then, at least for me, it would be easier to accept why I’m running into roadblocks.

      I look forward to your input.

      Thanks,

      Elmo

    • Anonymous
      March 6, 2010 at 4:45 pm

      Hello, everyone. I am new to the forum, and this is my first post. I was dxed with CIDP in July and have had no complete paralysis…plenty of numbness and steady weakening of lower limbs, but paralysis to me means complete loss of feeling and mobility in the affected area. That has not happened and, in fact, when I fractured my foot in November (tripped over it in the grocery store) I DEFINITELY felt that.

      Sharon

    • March 6, 2010 at 8:23 pm

      Hi Elmo,
      No paralysis with my CIDP. I understand though that GBS can cause paralysis.
      Sometime CIDP starts in the arms and then goes to the legs. My feet and legs were affected in a symmetrical fashion and my arms arms and hands were normal. A progression could have occurred if i had not been treated in time.
      I Had an EMG-NCS and then a nerve and muscle biopsy as well as numerous blood tests to diagnose. No lumbar puncture.
      Can they try you on prednisone which does not work on GBS at all? Or could they give you plasmapheresis or IVIG which will work on either CIDP or GBS?

    • Anonymous
      March 6, 2010 at 9:40 pm

      My husband with CIDP was diagnosed in 2007. No paraylysis, but he has atrophy of the right forearm and atrophy of the thenar plain of the right hand–generalized weakness in that hand and arm. Also has foot drop in the right foot. IVIG prevents his further deterioration but he has permanent damage due to misdiagnosis i.e. carpal tunnel and failed surgery. Diagnosed via EMG, NCS, MRI’s, Athena Lab. testing of blood, LP (slightly elevated), and neuro. exam. I think weakness of limbs with decreased function is more indicative of CIDP versus paralysis. I’ve never heard the term used in describing CIDP symptoms.
      Laurel

    • Anonymous
      March 6, 2010 at 9:47 pm

      Elmo,

      GBS is the acute and rapid onset form of the disease. CIDP is a slower and chronic form.

      Therefore, rapid onset would lead towards a gbs diagnosis and a sub acute onset with consistent attack symptoms longer than 8 weeks is the CIDP criteria.

      I hope this helps clear the muddy water.

      Dick S

    • Anonymous
      March 7, 2010 at 2:22 pm

      Hey Elmo,

      My experience with GBS certainly was a “rapid onset paralysis”. I went from a pronounced limp to paralysis of lower limbs, upper limbs and face within 4 days. When I could no longer feel or move the right side of my face, that scared the Sam Hill out of me. 😮 At that point, it finally hit home that something terrible was happening. I was in the hospital by the time the upper part of my body was affected but wasn’t diagnosed until at least a week later.

      Hmmm….sort of off topic, but I didn’t realize you hadn’t yet received a diagnosis. I truly hope you receive a diagnosis and treatment soon.

      Take care,

      Tina

    • March 7, 2010 at 4:12 pm

      Elmo,

      My onset of CIDP was long and slow with no paralyzes. However, after12 years of very successful treatment I suffered a rapid (36 hours) reversal brought on by an infection that resulted in paralyzes of legs, arms, breathing, you name it. Spent 3 weeks on ventilator and took 4-5 months before out of wheel chair and walking on my own.

      Soooo, I think that for GBS paralysis is part of diagnosis but not a part of diagnosis for CIDP. BUT, I can testify that you can be paralyzed with CICP.

      I hope you get a diagnosis and good treatment soon. took me 10 months to get the diagnosis and treatment. (I am doing really great now, symptom free)

      Bill

    • Anonymous
      March 10, 2010 at 8:12 pm

      Hi Elmo,

      I have never had para. either, thank God, once right before I had an IVIG
      treatment I walked with a gaint for about 3 days cause my leg was totally
      numb. That really scared me but after treatment it was back to just being
      somewhat numb. Go figure, but, speaking of criteria, after a year of
      getting IVIG treatment, my wonderful (ugh) insurance co. had denied me
      because now they say I don’t fit the criteria!! So now since it’s been 5 wks
      since my last treatment I guess I go back to pain, pain, and more pain and
      fighting with them. I called my Neuro but she is out of town till the 15. Sorry
      if I sound like a crab but I’m so sick of it all right now I just had to let off some steam!!! Thanks for the ear Elmo and friends
      Ms. Judy

    • March 10, 2010 at 11:05 pm

      Hi Ms. Judy,
      If they say no to ivig maybe you can ask about the low dose naltrexone that Erin suggested. If we ever had a problem, I would try it. I could not find any negatives, just positives. Good luck to you till the 15th.

    • Anonymous
      March 11, 2010 at 9:55 am

      Emily was never completely paralyzed anywhere – she was partially paralyzed. She could not open or close her hands all the way – they barely moved. She could only raise her arms up about half way to her head. She could barely wiggle her toes. She could still walk but could not run, jump or go up stairs. Her gait was terrible too. Her right eye could not turn to the right but could still move up & down.

      This was after months of pain, tripping & periodically dragging her foot while playing.

      Kelly

    • Anonymous
      March 11, 2010 at 10:21 am

      To everyone: thanks for posting…I’ll post a little more later.

      Kelly,

      Very interesting; thanks very much! What you’ve described as Emily’s symptoms are very similar to mine, it seems. My hands, when I try to move my fingers, often feel like they’re jammed into a tub of Crisco. Everything just moves more slowly than before. I also pointed out to another doctor yesterday that my fingers want to stay straightened or possibly “hyper-extended”. Haven’t had any eye involvement, but the arm/hand symptoms you mention are all very similar.

      The other thing is these d@mn spasms or fasciculations! They’re getting to the point where they wake me up at night, and not just in my extremities; also the trunk area. It’s maddening! Laid awake for two hours last night because of them!!

      Thanks to all,

      Elmo

    • Anonymous
      March 11, 2010 at 10:54 am

      [I]Elmo, the neurontin/gabapentin would help enormously with the spasmodic movements at night. Had restless leg syndrome for years, but it started affecting arms, shoulders, etc. after CIDP came into the picture. In the “old days” I’d get up, pour a juice glass full of milk, take 1 acetaminophen and 1 ibuprofen … go back to bed. That won’t cut it when CIDP comes into the picture. If you have anything like vicodin on hand, take 1/2 tab ( no milk ) and that’ll help. The sooner you get neurontin/gabapentin, the better, tho’.[/I]

    • Anonymous
      March 11, 2010 at 1:11 pm

      Thanks, Rocky. I was on Gabapentin for a while, but the doctor and I thought it was causing some breathing problems, so they switched me to Lyrica. Must be similar to what you had, because I’ve discovered the same things…ibuprofen and percocet seem to help, but since it’s getting worse, they aren’t helping as much as before. I also have to be careful with Ibuprofen since I started the Celebrex.

      Elmo

    • Anonymous
      March 11, 2010 at 1:38 pm

      Christmas Eve day my legs we numb and tingly – but I could walk holding on to my husband’s arm. I woke up Christmas morning paralized over my whole body – only 3 fingers on my right hand moved. Hospital admission, spinal tap, nerve conductor tests and a GBS diagnosis 3 days later (12/28) Rapid onset of paralysis, rapid diagnosis, rapid treatment (PE) – and I began the GBS recovery. I thik the terms rapid are important here – GBS is quick and beyone terrifying – CIDP is slow, frustrating and harder to diagnose.

      Good question – good luck. Keep a positive attitude because that helps the most!

      Cathie

    • Anonymous
      March 11, 2010 at 4:34 pm

      my sister, sandy, was originally diagnosed GBS when her legs seemed to be getting numb and worsening in mid Oct. her diagnosis was changed to CIDP and she was completely paralyzed and on a vent by the end of Nov. She is now able to move her head and shoulder. it has been 4 months of slow (very slow) progress and inability to breathe or speak. We watch every day for new improvements and she is staying strong to fight this horrible monster. This is just our journey. Everyone is different.

    • Anonymous
      March 11, 2010 at 4:51 pm

      Elmo, you mentioned fasciculations. I have these all the time too, when I am sleeping as well. My arms, legs and my trunk, even my tongue. One night my left arm twitching went on for hours.

      Do GBS’ers have these too or is this a symptom of CIDP? Mine started about 3-4 weeks in to my original symptoms. I keep asking if I have CIDP and the neuros keep telling me no at this point.

      How is a diagnosis of CIDP made, using what tests? It seems like it takes people a long time to get diagnosed with this, and I don’t understand based on what criteria. Can all of the diagnostic tests be normal, EMG/NCV, yet you still have CIDP? Does it take a while to show up? Sorry for all the questions, but I have been trying to understand this myself for months. I have also found out that muscle twitching can be a symptom of a lot of other things, such as fibromyalgia and anxiety.

    • March 11, 2010 at 5:41 pm

      Hi Jessica,
      We had fasiculations as well. It does not have to be difficult to get a dx. We took about 3 weeks. First doc was a wack job and said the facts that he can’t walk, pee, or move bowls was do to emotional stress usually caused by parents and sports. That was day 1 (peds neuro) day 5 our ortho guy (for inserts we see him ) set us up w/another neuro and told the neuro to do a ncv/emg, this guy said cmt which DOES look like cidp on the report. The difference being it would take years to get to Kevin’s state. Third doc was about 14 days later, talked over phone, described symptoms, he was not even in town. I cried to his secretary and told her that our orthop. guy from loyola recom him and she gave the neuro the message and he called me without ever meeting us!! That afternoon he set it up at Rush to have a spinal and to admit us. We spent 10 days in icu waiting for results, other tests and ivig as there was a shortage three years ago.

      So…finding a compassionate doc that listens is paramount, switch if you have to.

      How do they dx/
      Clinical presentation that shows the need for further testing. The order of the testing I imagine pertains to the severity of the clinical presentation. We had clinical pres and a bad ncv/emg, so the spinal was the next step.

      clinical pres
      ncv/emg
      spinal
      biopsy, nerve, skin, people don’t always like the nerve biopsy but sometimes people do not have elevated protein and it IS a tool to r/o cidp (nerve biopsy)
      some times it is necessary. The way I look at it is, if nothing else has proven cidp, but the clinical presentation is there, I would do it. At least with a positive result I could start treatment, what ever the plan is.

      Regarding your comment about taking a while, I would think that if it were cidp, a spinal would show by now, a nerve biopsy for sure. Unfortunately as you are finding out, everyone is different and does not always present text book.