Is it my IVIG wearing off or fatigue?

    • Anonymous
      February 20, 2007 at 11:15 pm

      I’m 4 weeks today from my last ivig Tx and for 2 days I have been more ataxic/ broad based gait, big toes feel frostbit again, more leg fatigue/aches, and my R foot is dragging. I did work out at home with my PT exercise 3 nights ago and did more reps. My physical therapist noticed my worse gait when I walked in and wouldn’t even let me do my exercises. She re evaluated my balance/strength and said I was worse but she thought it was that I overdid 3 days ago(she hopes). She will re eval in 2 days and if I’m not better she wants me to contact my neuro. Is this common with over exercise/excertion or could my ivig be wearing off? Anybody have any experience with this?

    • Anonymous
      February 20, 2007 at 11:21 pm


      It is definitely possible to overdue it physically. I just posted an article from the Communicator called ‘Whats in a Name …….” under [I]FAMILY MEMBER IN DESPERATE SITUATION[/I] by Elisa. This may be of help to you.

    • Anonymous
      February 21, 2007 at 2:48 pm

      Hi Dr. Shawn: I have definitely gone through this. Last week, going to the mall with my wife, I had to get a wheelchair for the first time in a year because I had overdone it so much my legs were too tired and painfulf or me to walk at all. The thing I have seen so often is that our neurologists look for strength but not endurance-at the doc’s office I can walk and look just fine, but if he took a 15 minute walk with me he would notice a limp and stumbling gait. So it could definitely be fatigue and overdoing things. Hope you feel better soon and, as so many have told me so often, get a lot of rest. Lying down flat is essential for me. Good luck. Jeff

    • Anonymous
      February 21, 2007 at 4:41 pm

      Dr. Shawn, You sound like a horrible patient ๐Ÿ˜€ Listen to us, please – rest, rest and get some more rest! Please.

    • Anonymous
      February 21, 2007 at 9:50 pm

      Dr. Shawn,
      I had a MILD case last August and I still get the frostbit painful feeling in my feet and shins when I get tired!!! Hope you are resting and starting to feel better!!
      Best wishes to you…

    • Anonymous
      February 21, 2007 at 10:36 pm

      Going to neuro in am. Everybody has made me less panicky. Hopefully he will just reassure me. I have been overdoing it. The baby had 106 fever and I was up with him 3 nights in a role. He is better now and I slept 10 hours last pm (wow). Today not better but not worse. Running low grade fever, L foot drag, and frostbit hands and toes. Lazy is hard for me but I’ve become a believer and I’m now trying to cultivate this. I keep trying to push back to work but now I’m accepting of the fact that it’s not happening soon.

      Oh, by the way -I am a very bad patient! My PT said so! She has rehabed 3 prior GBS and she said for this dz it is better to be lazy and only do the bare minimum that is asked of you in rehab(and go slow). When you push it sets you back. Ok I will try to behave! Thanks everybody for the support. Dr. Shawn

    • Anonymous
      February 23, 2007 at 8:56 pm

      Dr. Shawn — how are you doing????

    • Anonymous
      February 24, 2007 at 5:26 am

      I saw the neuro yesterday and had another NCV and it showed axonal varient of GBS. He said my mylin was intact. According to him this takes longer to regenerate/repair the actual nerve than it does to remylinate. He said 6 months. He did say my NCV was bad but slightly improved. Because I had worsening symptoms 4 weeks from ivig he is trying another round(since I had dramatic response to 1st round). If this doesn’t help in 2 weeks he will send me to mayo. He said the axonal varient is rare and he has only seen it one other time. Usually seen in China. Maybe I should start a thread to see if anybody else has axonal to see how they did. I’m trying not to take this as bad news but I’m afraid it is. Any ideas? Dr. Shawn

    • Anonymous
      February 24, 2007 at 8:49 pm

      Thanks for letting us know!! I hope your ivig treatment will give dramatic results again!!!
      Hang in there….

    • Anonymous
      February 28, 2007 at 11:03 am

      I personally tire of all the “guesses” by medicine. There is no “time line” for healing. Each body is different!! All to often someone is told they won’t heal or it will be x number of years or you’ll die with in X. I was given less than 5 years and 7 years past that “guess” I am still here ๐Ÿ˜€ Be faithful to the modalities that you feel will make a difference ~ excellent nutrition, yoga or water therapy, acupuncture, massage, your spiritual practice and REST etc, etc! Only with time will you know what and how much will heal. Namaste’

    • Anonymous
      March 4, 2007 at 4:38 pm

      Just finished my last ivig yesterday. Walking/ strength much better-whether it is from the ivig/rest/no PT I just feel blessed. Even went to Walmart and didn’t use the motor cart. Starting back tomorrow with PT and I will strictly “mind” my PT and do only what I’m told.

      Iowagal, I saw that you have been to mayo. They are currently setting me up. Do you have any neuro you recommend?

      Thank you, Dr. Shawn

    • Anonymous
      March 6, 2007 at 3:36 pm

      Dr. Shawn said “I have been overdoing it.”

      Sounds to me like you have an attitude there, Shawn. Are you a macho kind of guy? You don’t want to take crap from any stinking disease? Badges, you don’t need no stinking badges? LOL This GBS will kick you ass and make you a humble person! Lifestyle change # 298 in the GBS handbook: more serious consequences from “over doing it” (probably more so than at any point in your life).

      Remember, energy resource management and set “red flags” for yourself- for me, I know when I overdo it because a few muscles in my face twitch to let me know I need to rest.



    • Anonymous
      March 6, 2007 at 4:21 pm

      Hi Dr. Shawn,
      Don’t know if this should be another thread, but per your question ‘anybody else with axonal form of GBS’–my 11-yr-old daughter was just dx with axonal form of GBS, and neuro told us approx 30 weeks to regenerate nerves. The onset of her disease was approx Feb 6-8, about a month ago, following bad flu.

      Because many of her tests at that time showed nothing–no elevated protein, EMG/nerve conduction normal, reflexes normal, MRI normal–and she didn’t get worse after 6 days in hospital (never progressed past her legs, thank god), they sent us home with a diagnosis of leg weakness/possible mild GBS and said she’d be fine in a couple weeks. Well, she’s no better. Fatigue improved, but not normal energy. Her reflexes have diminished. And the walking is miles away. They haven’t given her IVig. Last Friday March 2 they said if no better in a month, they would do another EMG, and then possibly follow with IVig. I called the office yesterday and asked why wait for IVig, everything I’m reading says do it NOW. They are supposed to call me back today.

      My question for you, how long has it been since you came down w/ GBS? It sounds like you’ve been at this a while? What led to the axonal dx in your case? (Maybe I should find another Dr for 2nd opinion? Where would I begin? We live in Cincinnati, if anyone has ideas.)

      God bless you. It must be hard going through this with young children to care for. I hope you have some help?


    • Anonymous
      March 6, 2007 at 9:15 pm


      an emg/ncv recording both the f & m waves, done by a competent gbs neuro or neuromuscular doc, will show where there is axonal damage & where there is myelin damage. take care. be well.

      OH SE Ohio in Zanesville Dr. Robert Thompson 740-453-0680 . He currently has at least 2 of us as patients. I believe that the more of us that go…[he] will know how to treat us. I was also on the Rehabilitation Unit at Genesis Good Samaritan Campus (hospital) 800-322-4762 in Zanesville, Ohio. They were absolutely the best. I was referred to Ohio State but was extremely dissappointed in my exam there. Zanesville has great hospitals. I was treated at Mount Carmel East in
      Columbus and got great care there.

      *NOT recommended – Clevland Clinic* I have seen about 10 GBSers at Clev clinic and could not recommend a single Dr. Not because they are not good but because none of them impressed me. If your ins. will ok you to go to University hospitals (right next to the clinic) I would highly recommend you to go there. The whole neuro floor is fantastic.
      a 2nd gbser says no go to clevland clinic – i wouldn’t go back to cleveland clinic, they did nothing to give me a second opinion except run the same emg/ncv and sent out 2 teaspoons of blood for muscle disease testing, and ran a urine test without me giving them a sample–surprise it was normal. my neuro was upset that a well known clinic like cleveland.
      3rd post new info as of 6-06. FYI the head of neuro at the Clev Clinic was let go. The news is the new head that will start in Aug and will make many changes.

      In Akron call Akron General and ask for Dr Harvey Friedman. He was my Dr 23 years ago and in my opinion one of the most knowledgable in GBS. He has had at least 100 patients. a 2nd gbser agrees he is good.

      Grove City area There is a new Nero. Dr. Taylor who is supposed to be good.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      March 6, 2007 at 10:50 pm

      I’m so sorry to hear about your daughter. I have a 5 y/o and a 16 month/o and my heart goes out to you. I came down with GBS 1/8/07( about 4 weeks before your daughter). With the limited history you gave me I can’t believe they did not try ivig at the begining of her symptoms. I would insist on a trial – it may not be to late. If she has stabilized though it may have limited value at this point.But, other than price it is relatively safe to try.Also plasmaphoresis may help her. The studies show equal benifit-but both children in Jonesboro(I know their parents) who had GBS failed on ivig and had to have plasmaphoresis. The excellent pediatric neurologist who diagnosed them early is Dr. Stephen Bates. I would definitly get a second opinion-preferably from a pediatric neurologist. You may find one by contacting the closest children’s hospital and asking. Gene sounds like he knows your area well. The Axonal info came from the nerve conduction test results. Also there are blood tests that can diagnose the antibody attack site(takes about 2 weeks to come back). Feel free to contact me in my private messages if I can help you further. I’m on a steep learning curve myself. Also remember it takes a long time to repair the nerve damage so it is to early to tell how you daughter will do. It is important to make sure she stabilizes and starts to improve. Please keep me updated. Dr. Shawn

    • Anonymous
      March 6, 2007 at 11:04 pm


      Hey, I’m a women but the rest you got right. This is the first thing that has ever got me down. I believe you said it true- this disease will humble a person. I’m learning to be “lazy” and rest and to accept my limitations.(for now at least).Nothing like learning it the hard way-like crawling up the stairs in my home when I overdid. Thanks for letting me know I’m not the only one who couldn’t just “kick” the disease. I think my best plan of action is just persevering.(I’ll have to repeat this to myself daily). Good luck/wishes for you. Shawn

    • Anonymous
      March 6, 2007 at 11:54 pm

      Hello Dr. Shawn I’m in Little Rock and I know a great neuro here. Dr. Alonzo Burba. He knew right away and jumped on my GBS ASAP. He was up at the MRI getting a third one at 4am. The next day by noon he had a spinal puncture, started the plasma pheresis and IVig. I still had to get the vent but it wasn’t his fault.
      Good Luck
      If you would like my number just ask

    • Anonymous
      March 7, 2007 at 12:45 pm

      Hi Dr. Shawn
      Sent you a post. Look under, Help first time in.

    • Anonymous
      March 7, 2007 at 11:22 pm

      Tim, I sent you a private message.

      Peggy, I found your post.


    • Anonymous
      March 8, 2007 at 6:41 pm

      Dr. Shawn, glad to hear that you had a good day yesterday. The IVIG tends to give me some extra energy for a day or two afterwards at the very least. With GBS/CIDP when you have a good day you definitely appreciate it. Hope you continue to get better each day ๐Ÿ™‚


      [quote=Dr. Shawn]Just finished my last ivig yesterday. Walking/ strength much better-whether it is from the ivig/rest/no PT I just feel blessed. Even went to Walmart and didn’t use the motor cart. Starting back tomorrow with PT and I will strictly “mind” my PT and do only what I’m told.

      Iowagal, I saw that you have been to mayo. They are currently setting me up. Do you have any neuro you recommend?

      Thank you, Dr. Shawn[/quote]

    • Anonymous
      March 9, 2007 at 11:30 pm

      Thank you -I am doing much better. The power of ivig again.Shawn