1st GBS, then CIDP -?

    • Anonymous
      March 15, 2008 at 2:09 pm

      Wondering how many of you had an initial diagnosis of GBS and was later determined to be CIDP? I got tired checking the members list. Thought it would be quicker to just ask.
      What changed the diagnosis and is this considered to be a mis-diagnosis initially or does the GBS sometimes lapse into CIDP. I’ve read many articles comparing the 2, but what changes the initial diagnosis?
      And how long was it from one diagnosis to the other?

    • Anonymous
      March 15, 2008 at 4:27 pm

      Hi JayDee,

      I’ll be your first answeree…oddly enough I am coming up on a my one year anniversary too. It took a while to diagnose my GBS, but the onset to me was fairly classic in retrospect and after reading other’s onset. It was over a period of several weeks and was an ascending paresthesia and paralysis that stopped at the 3-4 week mark when it got to the top of my head. Everything stopped at that point. I didn’t get better and didn’t get worse. Had MRI’s of everything but my toenails, all labs were good, etc. Finally insisted on a LP which showed elevated protein. At that point I knew it would take a long time to heal, thinking a couple of weeks was a long time. I made very small improvements over the summer but was also in PT 3 x week for 6 months. In September/October I noticed I was losing strength. I used 3 pound weights at PT and just couldn’t even do that anymore. And I was narrowing down what I did do to absolutely nothing. Finally my PT said I need to go get checked again. My neuro was at a loss, said I shouldn’t be getting worse. Went to a new neuro who specialized in GBS and CIDP. Did the nerve conductions, etc. and I had active demyelination, loss of strength, etc. He said I was having a relapse of GBS. At that point had my first round of IVIG and had immediate improvement, but for only 6 hours or so and then it went away. At that point is when he brought up the CIDP. First because I had improvement immediately with the IVIG months after the initial diagnosis, and then when I “relapsed” again, we agreed on this diagnosis of CIDP. After having the IVIG and Solumedrol, I am convinced about the diagnosis. However, I don’t know if I agree that they are two different entities, although they are supposed to be. Right now I am on every two week IVIG and basically get one good week of walking and one bad. But that’s this month, we are trying new things right now to see what works. It’s still better than bad walking all of the time. My strength difference is quite dramatic when I am treated vs not treated. And I know other’s have the same symptoms, crawling into treatment and jogging on the way out. That has to be the inflammatory part of this. Hope that helps!!

    • March 15, 2008 at 4:58 pm

      Kevie was dx gbs 9/27/06, cidp3/19/07. Symptoms of weakness reccurred and ivig stopped it. In addition another ncv/emg confirmed new demylenation. Currently on monthly loading doses.

    • Anonymous
      March 15, 2008 at 5:23 pm

      I too went the route of a GBS diagnosis to a CIDP. They were questioning the CIDP all along as I kept relasping as well. Initially I was diagnosed May 2006 with GBS and then CIDP in August of 2006. I was diagnosed by an EMG, LP and symptoms at first. My initial symptoms came on over a 2 week period of progression of loss of strength to the point of not being able to get up out of a chair or walk up the stairs. My diagnosis of CIDP was made from the continous symptoms that I would experience. Initially they would come on in 24 hours but not go away till they were treated with IVIG and I would bounce back again. I was also started on steroids which I am still trying to wean off today. I also had a comparison EMG done as well. I am happy to report that I haven’t had a relaspe now since March of 2007. I have been receiving IVIG every 3 weeks, steroids and then in August I started chemo. (I had breast cancer as well) I attribute the major part of my recovery to the chemo I got. I made more progress after I started the chemo than before. My IVIG just got backed off to every 4 weeks and I am continuing the wean of steroids. I think the diagnosis of GBS was incorrect initially but I would have made the same deduction in my case as I had no symptoms before my initial presentation. Who could have predicted all the relaspes?

    • Anonymous
      March 15, 2008 at 6:43 pm

      Thanks to all of you. Your posts were very helpful.
      That makes it 3 for 3. First diagnosis was GBS, then CIDP.
      I’ll be curious to see if there are more.

    • Anonymous
      March 16, 2008 at 1:28 am

      Add me to that list also. GBS dx in aug 05, Oct 05, Dec 05 than my PCP dx’ed me with CIDP since I was relapsing without recovery in between. Now I’m in a flare up that I’m trying roids on and riding the roller coaster of decrease the roids and the symptoms increase-increase the roids and the symptoms decrease again–still tweaking!:rolleyes:

    • Anonymous
      March 16, 2008 at 4:44 am

      And me – though I started off with a diagnosis of CIDP because of the initial slow progression… then when the acute stage came on and I was hospitalized the doctor changed the diagnosis to GBS because of how fast I went from floppy foot to total paralysis. Then after I got out of the hospital THAT neurologist changed the diagnosis to “I have no idea” and I went to Hopkins where they changed my diagnosis back to CIDP “an unusual presentation.”

      July 2005 numbness in R foot (Dawn of the Dead)
      January 2006 numbness spread to R leg
      July 2006 numbness spread to L foot and leg
      August 2006 complete paralysis and numbness w/in 2 weeks, including cranial and autonomic nerve involvement
      September 2006 some remittance w/ IVIg
      October 2006 symptoms return with a vengeance (Return of the Dead)

      and it’s been like that since then – have a relapse, get treatment, get better, etc. etc.

    • Anonymous
      March 16, 2008 at 8:52 am

      You can add me to your list, and then take me off; I was diagnosed with GBS in March 04. In August 04 changed me to CIDP. I went through many treatments of IVIG and 5 more Plasma Exchange treatments until April 06. In May 06 we moved from California to Texas. In June my new neuro said I don’t have CIDP, but residuals of the original GBS. I’ve since changed neuro’s again and have had a number of EMG’s and they all say there is no new demyelization. I don’t know what that first neuro saw to change the diagnoses to CIDP. I haven’t had any more IVIG treatments which kind of confirms the GBS. My residuals are still with me, big time. Take care – John

    • Anonymous
      March 16, 2008 at 12:36 pm

      Emily was first dx’d with GBS iDec. 29, 2005 then CIDP in March 2005 after a relapse in her symptoms.

      Most people with CIDP are diagnosed with GBS first since GBS doesn’t have the chronic nature of CIDP. Once a person relapses then they are usually given the CIDP diagnosis.