Would appreciate comments on diagnosis

    • Anonymous
      December 28, 2007 at 9:34 am


      I am new to this forum. Came down with mild symptoms in mid October of this year. Started with numbness in front of abdomen and several days later had tingling feet and hands. Went to hosp for tests. Normal lp, EMG and mri. DX wild mild GBS and went home. Got worse and at 3 weeks much weaker with numbness spreading but could walk. EMG slightly off but not bad. Did IVIG and 2 days later weaker again. 3 days after completion of IVIG started PLEX (this was at about 4 weeks. Had another LP and MRI and still normal. Got really weak during PLEX and couldn’t walk for a couple of days and got better so I could walk with walker. By this point though, entire abdomen and pelvic region numb. Feet and hands very uncomfortable/numb and no dexterity in hands. 1 week after 1st PLEX completed (PLEX done over 10 days) got weak again and couldn’t walk and did PLEX again. Did anoher MRI and still clean. Now I’m doing PLEX twice a week and have maintained walking w/ walker but still have alot of numbness and loss of dexterity in hands though strength OK. Went to specialist at John’s Hopkins in Baltimore the week before Xmas. Had EMG just prior to and at JH. Both showed all normal results with slightly lower F waves only, but still in the normal range. Doc at JH says could be CIDP and wants me to do PLEX and start on cellcept.

      Question is – has anyone had similar experience where they bottomed out and had slight recovery, with relapses all within the 6-8 week mark? I don’t want to start on steroids unless absolutely necessary. Have new neuro locally and he says to maybe go off all treatment and see what happens. I would like to maybe try IVIG one more time b/c the best I have felt during this whole thing was once when I got fresh frozen plasma during a PLEX b/c my blood clotting factors were too low.

      Would appreciate your comments.


    • Anonymous
      December 28, 2007 at 10:08 am

      Hi there,

      I can just relate my own experience but was diagnosed with GBS last April with no treatment. Had elevated LP at the time and they said it would go away. I got a little better, and then got worse to where I needed to walk with a cane. Went to new doctor and had one round of IVIG last month with about 6 hours of improved walking and then it went away. I had another round last week and he added Solu Medrol every day. What a diference. My walking is quite a bit improved still, although I have quite a bit of numbness returning now. But my gait is better and my stamina is better. I would suggest asking for another round of IVIG and have them add SoluMedrol to see what happens. You don’t sound classic GBS since you are worsening and sometimes it takes several rounds of IVIG to take hold, especially if you have CIDP. They said I had a relapse of GBS, but I am thinking it is probably CIDP since I improved so dramatically. Good luck and be patient:) as hard as that is! Gabrielle

    • Anonymous
      December 28, 2007 at 10:16 am

      hi debbie & welcome,

      i can agree it might be cidp, but not ready to say it is cidp. i also agree w you to stay away from steroids if you can get plex or ivig to work for you. they did not give the ivig a chance to see how effective it is for you in comparison to plex cuz the plex washed out the ivig. although anything is possible w cidp, the 6 to 8 week ivig or plex schedule is somewhat of a norm which you may need for life.


    • December 28, 2007 at 12:35 pm

      Hi Debbie,
      As mentioned, if you had ivig first, then pp, the ivig is gone. How long was the course of ivig, and how much? Was it the standard 2g/kg? It may take a couple of rounds of loading doses of ivig before you see a difference. Your body may use the life of the ivig at a different rate than others, so you cannot compare. On the conservative side, maybe they can give you 2 loading doses 3-4 weeks apart, see where you are and then try a maintenance schedule. By then, if the symptoms still prsist, I would say it is probably cidp since it fits the time frame and as Gabrielle mentioned, maybe introduce solumedrol. Prednisone has caused weakness in and of itself to some cidp patients, so I might wait on that. If all of these fail then there is the immunosuppressant route. Have you been tested for IGg Iga levels? Are you getting S/D or liquid if Gammaguard? Has ms been ruled out? Have the typical heavy metals, lymes disease been done? I only ask this since you state that your ncv/emg are pretty normal. Good luck to you and best wishes for a dx.
      Dawn Kevies mom

    • Anonymous
      December 28, 2007 at 12:50 pm

      Dawn’s Mom

      Just sent you an email but forgot to say I had one round of IVIG initially. Not sure of the dosage but it was one bag a day overt 5 days and too a couple of hours or so to do each day.


    • Anonymous
      December 28, 2007 at 1:32 pm

      Dawn’s Mom:

      Just got wod that my IG IGA levels were in the normal range – not sure what that looks for.

    • Anonymous
      December 28, 2007 at 5:49 pm

      [SIZE=”3″]I was dx with cidp in nov this year. my first round of ivig did nothing. I’ve been on prednisone 80 mg a day and am now being weaned down from the prednisone.
      i had my second round of ivig, that is five days of treatments right before xmas and my hands and arms have improved.
      i have put on weight and look very bloated from the prednisone, but md’s feel it is helping me.
      md said today that i will be on ivig txs for quite awhile on a monthly basis. he felt it would start at 3 x dosing for a few months and than go to two doses a month.
      some on the forum have mentioned they will be on ivig for life at different intervals.[/SIZE]

    • Anonymous
      December 29, 2007 at 12:43 am

      I was 1st dianoised with GB on 4/9/07. My neuro told me up front I was borderline on being diagnoised with cidp because how long it took for my symptoms to progress (I had a eally bad virus in Jan) my 1st symptoms started mid Feb. I was diagnoised on 4/9/07 with GB. Started on IVIG that night. I received 11 total my 1st hosp stay. When I got out I did PT ans OT and was started on prednisone. I was weened off and after 8 wks off com p.Guess what????? I relasped and did another stay. ^ more IVIG treatment and iv Sudomedrol for 5 days. Got out, cont. with pt and ot. Put back on roids and Imuran. Afet 8 wks off the roids and relasped again. Since the ivig really was not helping me (I would always just get better so much–if that makes sense) I was sch for 5 PE. After the 3rd one I was walking with a cane and not my walker. I was able to stand up in the shower, open door knobs and just do little things I lost the ability to do. Since I was responding well to the PE he ordered 2 more. In the hosp I had a total of 7 PE. Then I had a round of 1 each week for 6 wks. (at this point I was on 60 mg of roids and 150 mg of Imuran. I did another round of PE this tome 8 everyother week. Now I go every 3 wks. I have been weened down to 10 mg of roids and still taking 150 mg of Imuran. Like you I would relaspe about every 8 wks. Good news is I have not had another relaspe. My dr is trying to streach the time frame for getting my PE. I will go every 3 wks for 2-3 months and if all is still good then I will go to once a month. I finally was given the o.k. to start driving ad go back to work (after 9 1/2 long months) I am only doing about 24-30 hrs a week until the 1st of the year.
      Good Luck to you

    • Anonymous
      December 29, 2007 at 6:54 am

      Hi MJ
      Sorry to hear about all the different meds you have had to endure. But it sounds like you are making great progress now.
      I was wondering if you could make a quick comment about the “OK to start driving again”. I am in a situation where my job depends to a large extent on driving, and I am thinking of going on disability (for various reasons). But I would prefer not to give up my drivers license because I fully intend to beat this CIDP thing. I was wondering who it was that gave the diagnosis that you could or could not drive. Were you required to take a driving test when you started to drive again? I realize that this may vary from one state/country to another, but it would still be interesting to learn from first hand experience.

    • Anonymous
      December 29, 2007 at 10:37 am

      Andrew I think your DR would tell you if you couldn’t drive anymore. If he felt that the nerves in your body is so bad and what you tell him about the feelings in your feet and body.
      When my Dad had is stroke he was in the hospital for about 6 months. We wanted him to have a power wheelchair and the DR said no. He felt he wouldn’t be able to drive it safely.

      When he first had the stroke they didn’t take his license away from him but told him he wouldn’t be able to drive without their approval and would need a driving test with one of their therapist I think it was but he got worse so that was out of the question.
      Your DR can pull your license away from you and it would be on file with MTO. But if he doesn’t then you make the choice whether you want to drive or not and if you don’t then leave your driver license in a drawer and just renew when you have to. This way if you are more able to drive you would have it.


    • Anonymous
      December 29, 2007 at 9:40 pm


      Dr. Cornblath at Johns Hopkins is one of the BEST in the world (honestly!), and he has some very good doctors who I believe have learned a great deal about GBS/CIDP from him. Im not sure who you are seeing there at the moment.

      Also, I’m not sure if the neuro’s at JH told you that if you had GBS, the IVIG would not stop the symptoms, you would, after having the IVIg still have to “bottom out” before your improvement and road to recovery started, however, since the tentative CIDP diagnosis, that may not be relevant. I echo what Gene said about the PLEX washingout the IVIg, normally only after a 2 week period do they consider another dose of IVIg, or possibly PLEX. I am often amazed that the doctors dont realize this before ordering PLEX so soon after IVIg.