• October 30, 2011 at 3:18 am

      what is the difference between gbs and cdif? Struck with gbs 1998, got stronger but lastt 5 years weaker and weaker. How is cdif diognosed? help

    • Anonymous
      October 30, 2011 at 12:12 pm

      Do you mean CIDP?

      Basically, CIDP is chronic & GBS is usually a 1 time illness. With GBS the active disease process ends in a few weeks to a month but there is a usually a long recovery time. With CIDP it takes longer for the disease to hit it’s peak & usually, with treatments, the process can be halted & healing can begin. Of course that’s not a rule & the disease process can vary by individual.

      They both cause inflammation & demyelination.

      GBS & CIDP are both dx’d by MRI of the brain & spine, EMG, & a spinal tap. A majority if CIDP’ers are dx’d with GBS 1st. Once the relapse then they get a dx of CIDP.


    • October 30, 2011 at 5:31 pm

      totally unable to move within twelve hours, some improvement, walking a little ways, with full leg braces and walker, for 1/2 hour couple days a week. a couple of years ago things started to go downhill. no muscles in legs, guess was using my hips to walk, energy level way down and lots of pain. IVIG did not work for me

    • October 30, 2011 at 5:33 pm

      IVIG did not work for me


    • Anonymous
      March 25, 2009 at 10:36 pm

      :confused: Found out my spinal tap was OK so now I have been passed from the regular nero to a neromuscular doc, waiting to hear who at mayo & when. Is this normal? I JUST WANT TO KNOW WHAT THE …..I HAVE! So many years & still NO ANSWER!!! Would have another knee replacement in a minute than go through these cramps/spasms! I knew this would probably happen because the reg. nero told me if it was not regular MS than she would have to pass me to one of the nero mus. specialist but what can he tell me by looking at the tests that she can’t just tell me? The only test they have not done from what I have read here is a nerve biopsy. Obviously she saw demylination from the emt & nerve cond. tests so why send me else where is it just because this other doc can really see something else? Can they really see a demylination on the emt & nerve cond. tests? Does it always mean something & usually what? Just want it to be over & know. I can deal with anything, just knowing is better than not!!! You all & the foundation have been so helpful but now I just wonder if I’m not starting at the beginning all over again. Yes, I know its better to get with someone that knows more about what ever they are suppose to know about but if they can’t figure it out than where am I? That sure did not make too much sense but hopefully you followed it! 😮
      Kathi 😡

    • March 25, 2009 at 10:53 pm

      Hi Kathi,
      Some people do have a normal spinal. The ncv/emg will show slowed velocities and conduction blocks. Short explanation, how fast your nerve responds when it get jolted. The problem is those results can be with some other issues as well. For instance Charcott Marie Tooth which was one of our 2nd dx. until we had the spinal to rule it out. what the nerve biopsy will show is if there have been other demylienation episodes. It is called onion bulbing, each layer represents a new demylienation process, like peeling away the layers on an onion. It really isn’t used all that much any more because some people have difficulty healing from it, others do fine. I do know of a person here who tried all sorts of treatments for a cidp dx that were not working who had the ncv/emg results but no spinal result after a year or so, they did the nerve biopsy and it WAS NOT cidp per the biopsy. So if you have no other answers, it may be an option. Cheryl, angel2ndclass has recently had a skin biopsy, maybe you could pm her to see how it works.
      Good luck, Dawn Kevies mom

    • Anonymous
      March 26, 2009 at 2:42 am

      Hi Kathi, I sent you a pm. Stay Positive, Stay Strong!:) Big Hugs!!

    • March 26, 2009 at 12:05 pm

      I hope I was not out of place giving your name. 🙂

    • Anonymous
      March 26, 2009 at 1:57 pm

      Thank you for responding. I did write the other gal about the issues. I tell ya what I thought it was hard back trying to find out what I had when I had lyme which went 8 yrs before I knew & now this, what ever the heck it ends up being is most likly from all that time it took to get that dx. The body is such a interesting vessel! If you have a skin biopsy that is into the nerve isn’t it? Now is it possible for it to not show anything in one area but maybe another area will show something & how do they know where to test if this is the case?

    • March 26, 2009 at 2:07 pm

      sorry no info

    • Anonymous
      March 26, 2009 at 2:15 pm

      Is that it overlaps with a hundred others! Doctors who are diligent as well as us patients persue answers…if they are there. At times they aren’t.
      CIDP diagnostics from all I gather entail a long process of eliminating other things… there is not ultimate test to confirm it, rather the combination of blood work, spinal work-ups, nerve studies, MRI’s, CT’s-PLUS a savvy doc who knows it when he/she sees it.
      OK films are films, hard to contest [unless going into pricey hi resolution tests that are rarely being approved for the ‘doing’ now], nerve conduction tests do have heaps of variables tho, which is why each new neuro wants to do ‘their own’. Spinal? Well, as said, it isn’t always conclusive per-se. And then the whole sural biopsy route is often suggested if all other tests aren’t postitive one way or the other. The sural biopsy is going out of favor fast tho, as it can cause damages due to possible infection…and it only proves that nerves are dead. Nothing more. [Look up ‘sural biopsy’ and ‘punch biopsy’, the two standard testing methods in use] Many insurance companies won’t pay for it except for extreme cases [the kind which have to be appealed].
      Bloodwork? Well, there are reports that even these can be ‘inconclusive’ one time and the next ‘definite’…
      Yes the human body is a complicated thing! The more I’ve learned, the more respect I have for it, and the more I marvel that I have survived! Count your blessings too, always keep things in perspective. Best always

    • Anonymous
      March 26, 2009 at 10:58 pm

      Hi Kathi, The nerve biopsy and skin biopsy are totally different. One, like Dawn mentioned is the sural nerve-nerve biopsy-they look for the nerve appearence-bulb etc. The skin biopsy is alot simpler-its a punch biopsy taken only from the skin-only I think 1 mm deep. It is to see how the nerves in the skin-small fiber nerves-look-if they are plentiful and healthy looking. I saw a pic of two samples today-there really is a big difference and I am really glad I had it done. I won’t get my results back until next week. The procedure is simple-at least for me it was since I can’t feel much. It was more nerve racking for my nurse then it was for me:D I think it only took about 20 mins for the whole procedure if that. A couple injections of lido for comfort and a couple seconds later the bandaids went on and I was done. The samples are taken from the leg, at the hip and at the calf. This was done in my drs office, where a nerve biopsy I do believe is performed in a hospital setting. I’ve had absolutely no problems with either location, no bleeding, no infection and no pain. This type of procedure is mainly for those who have sensory involvement, as it won’t tell anything about the appearence of motor nerves, the onion bulb effect or anything like that.

      Dawn, No Worries Hun!!:)

    • Anonymous
      April 1, 2009 at 12:28 pm


      I had a sural nerve biopsy. It was the final diagnostic tool for me. It showed demyelination and remyelination in both sensory and muscular aspects. Combined with the other test results, it gave me a final diagnosis.

      In the beginning, none of my test results were way out of line. 10% above normal here and there, 15% here, 5% there. Just enough to keep looking, but no BIG RED FLAGS. Homeagain in on the right track, there is no single test for CIDP. Kind of process of elimination. I hope they are able to eliminate CIDP, I would certainly rather have something else.

      I also agree that KNOWING is so much better that tests, tests, and more tests with no clarity. I went for five or six years without a diagnosis. Wondering what was happening to my body and how I could combat what I didn’t understand.

      Keep after your neuro. Get your test results from him, and his office notes. read what he is saying and try to understand where he is going. Nothing beats knowledge, nothing.

      Good luck

      Dick S

    • Anonymous
      April 1, 2009 at 11:01 pm

      Hello all,
      What do you all mean when you say sensory & motor issues? What is MMN, a varient of CIDP but how & what is it? Is it similar? How many with CIDP or other varients have issues at night with the legs? Cramps/spasms? I don’t hear alot about them in posts? Yes the fatigue after doing too much but not the other? I know everyones bodys react different but what seems to be the common thread with most? OK for me if you stand for any length of time, you start to hurt & legs feel like cement blocks, so you sit which always feels better but then you go to get up & you look like a 90 yr old trying to walk that is if the legs will even work so you stand there pretending to look around like you left your purse just so people won’t notice your legs won’t seem to move because of the pain & feeling like cement blocks and or the brain does not seem to make them move but you can feel them!!!!!!!!!!!!!:eek: Then you get them to move but they just don’t want to MOVE very fast because so heavy & hurt???? So lets say you are getting from the car to go shop & the above happens but once the legs get moving you can go faster & faster (not at turtle speed) then you feel like you are walking normal & then feel like a fool because if anyone saw you get out of the car & start to walk & then saw you walk out of store (and you have not shopped for long & the legs are not wore out from shopping too long) and you seem to be walking normal, what they must think!! So sad my handicapped sticker wore out yesterday from having the knee replacement back in Oct. so now I’m parking where ever I am lucky to find a spot which usually is never close. Will have to look into another one somehow. Guess I will just wait to see what the new doc says & maybe I will get brave & ask for one. I tell ya what I learned after the knee how precious those spots are. As I got better at walking, I would only park in the further one out because I had experience in using the real close spots & boy is it special when they are open & you need it!!!

    • April 1, 2009 at 11:30 pm

      sorry no info

    • Anonymous
      April 2, 2009 at 3:28 pm


      Hopeful answers

      1.) motor and sensory… Your nervous system supplies nerve signals to muscles so they contract when called upon to do so. CIDP sometimes affects the neuromuscular only. Fatigue, weakness, cramps, muscle soreness, sometimes cmplete muscle dysfunction. Your nervous system also supplies the information regarding touch etc, the sensory stuff. Sometimes CIDP affects mainly sensory nerves. Remember that each nerve pathway is its own transmision line there is no other signal on that line. Kind of like you have your very own road to work, nobody else gets on. Since the sensory stuff goes all the way to the fingers and toes, that nerve has greater exposure to the immune cells that destroy myelin, and therefore greater chance of degradation.
      2.)MMN- Multi focal Motor Neuropathy, Ken is so much better able to explain this variant, because he has it. Multifocal means more than one place Motor means movement (muscles). I believe it is not necessarily symmetrical (same on both sides) but I am not sure.

      3.)Cramps/Spasms/ and the like at night. I think all of us deal with these guys at night and during the day. It is just so commonplace that we have all found ways to deal with them. Do a search at the top of the CIDP forum for cramps and spasms and you can get some great advice on handling these
      4.)I know exactly what you are talking about with your feet. If I stand still 5 minutes I am in BAD pain. I need to sit. After I rest, I can get back up for a little bit. If I overextend my standing time, I need the wheelchair for hours.

      5.) I have had people ask me if I am all right or need help when I am just walking point to point.

      6.) Ask your Dr. for a Handicap sticker/plate. If you can’t walk 200 ft, or need assistance, or need a wheelchair, etc. they will fill out the form. In NC it is $5.00 per placard, I got 2 one for each car.
      7.) like Dawn Kevie’s Mom said, if you need it, get it. There is no need to punish yourself.

      Good Luck


    • June 19, 2008 at 11:09 pm

      Hi All,

      Recently I have experienced highly increased tingling in my hands and feet after what I think was a “normal” (is there such a thing?) recovery from GBS (dx 1/9/08).

      I have seen both my primary care doctor and neurologist. They express no direct cause for concern as long as I am not losing strength again. (I am not! I went to the gym today and everything seems to be working fine!)

      My question for those of you who have recovered/are recovering from GBS, did your tingling wax and wane? Was it cyclical in nature?

      Confused – and thankful for ALL the good people on this list!


    • Anonymous
      June 19, 2008 at 11:31 pm

      Hi Tom, I had GBS 25 years ago and the tingling has come and gone over the years. I had tingling and numbness in my fingers and toes (mostly in the toes) for 4 years straight after the GBS. Then it came and went. It has hit again in the last 2-3 years with a vengeance. The nerves are damaged and for some of us this will be a life long process. It can be annoying for me at times. If it gets really bad, that tells me I need to rest. I put my feet up for awhile, sometimes literally:D , and take a day to just veg. It seems to help a lot.

      Glad to hear you are doing the gym. Just be careful to not overdo it. Remember it takes the nerves up to 5 years to repair and if you over tax them, it can cause some of what you are experiencing. Exercies is good…in moderation!

    • June 19, 2008 at 11:34 pm

      Thanks, Jan,

      It helps to know that A LOT! I will try to be patient with my body – and not push…

    • Anonymous
      June 19, 2008 at 11:39 pm

      My hubby was dx in June 07. He was in the hospital 10 days, recieved plasma, and did physical therapy for about 2 weeks after he got out of the hospital. The drs were amazed at his recovery rate(although he never was completely paralized). He is a pro athlete and was back on the field within 2 months. In dec., he started having symptoms (tingling, numbness, weakness, achiness) again. We called the nuero and he suggested that he was just not fully recovered and needed to rest. Symptoms went away after about a month. The end of May he started with the same symptoms. The symptoms are finally on the way out. Both times he was physically working out to the point of exhaustion. At first we had thought maybe he was having a relapse, but after reading posts we figured it was probably all the extra workouts he was doing. Like you we had thought he was fully recovered and life could go on as before. Boy were we mistaken. I think you have to learn your limits. I can say that my hubby will definitely pay closer attention to his body now. It has only taken him two flare ups to get there. This forum has been very helpful.

    • Anonymous
      June 19, 2008 at 11:52 pm

      Just a quick note to both of you….and not intended to burst your bubble, but as far as I am concerned there is no such thing as a full recovery. I was told I was fully healed but the reality is, even though life has gone on for me and I have lead an active and full life, there have always been little things lurking in the background that I can attribute to GBS. If I could go back and do anything over, it would be to rest more often. I would also have made sure I kept better records of any tests. I am having to go back to a neurologist now and I have no documents of where I was at when I left hospital. I have tried to get copies but the dr’s and hospital records are purged after 10 years so we have no way of knowing what my nerves and muscles were doing back then. I suggest you get and keep copies for yourself as you never know what the future will bring. I did not expect to have residuals starting 20-25 years later. The new thought around here is that we may have something similar to post polio syndrome.

      Take care and rest!!! It is so important to long term well being!

    • Anonymous
      June 20, 2008 at 12:08 am

      You didn’t burst my bubble! that happened in June 07 when we were told he had gbs instead of ms or brain tumor as initially thought. Talk about rude awakening!

    • Anonymous
      June 20, 2008 at 9:28 am

      I hear you!