8 wks since first symptoms, not sure if still declining or holding…

    • March 22, 2011 at 11:42 am

      Marshall first noted symptoms 8 weeks ago. He went through IVIG which did nothing. 10 days later he did plasma exchange which definately improved his energy level. At the end of the plasma exchange he could still walk 10 feet with a walker. Now he can’t even do that.

      What we are struggling with is trying to determine if he is still declining or if the change is due to lack of use.

      We are waiting for a referral to Seattle. Bellingham is a small community and they just don’t see that many cases.

      Any thoughts on the continued decline? Are things still declining or has it slowed? How can we tell?

      He is getting PT and OT every day. I have him taking B vitamins, fish oil, olive oil, CoQ10.

      Would another round of IVIG be suggested? What about dealing with the immune system? What RX have worked for others.

      Boy, am I full of questions.

    • March 22, 2011 at 1:04 pm

      8 weeks is kind of the breaking point between cidp/gbs. acute, sub acute. We were 6 weeks and got a dx. the first dx was gbs, however, had we let it progress longer we would have known it was cidp. by intervening right away we were obviously able to ward off additional damage, however we did go through what you were going through wondering if it was residuals or a decline and it is now cidp. All of this being said, what tests have been done to confirm the dx? was a spinal done w/an elevation of protein/ a ncv/emg? to see if there are blockages or slowed velocities? has ms been ruled out? was an mri of brain done to see if there are lessions (ms) basic blood work? a test for charcot marie tooth, lymes, heavy metals, all typical neuro blood work ups.

      another option could be that doing pt every day could be too much for his body. the muscles do not recieve the message if there is inflamation, therefore overworking them makes them work even harder. there was a neuro at one of the symposium that said pain, no gain as opposed to no pain, no gain. unfortunateley you are at a time frame that not enough time has passed to say it is either gbs or cidp. Without diagnostic criteria or maybe another pp with a marked improvement, it is hard to get answers. ggod luck

    • March 23, 2011 at 7:07 pm

      I was in the hospital/in patient re-hab for 7 and 6 days respectivley. Upon discharge there was a period of about 8 weeks where some things seemed to get a little worse, ie hand, upper body strength, and fatigue. At the same time my ability to walk was slowly increasing. Now 5 months into it virtually all things are getting better (much slower than I would like). When this deterioration occurring I called my nuero and was really concerned the GBS was coming back, after a visit he said it is ABSOLUTELY SOMETHING you need to watch but it could be that you did not hit bottom until after being discharged.

      I had IVIG only and did not experience much of a lift from it either and my time frame was about the same as yours. I think you are on the right track in getting an opinion from a nuero at a big hospital that sees more of these cases. Make sure he is getting plenty of rest and not over exerting himself which is very easy to do.

      Take care and keep us updated.

    • Anonymous
      March 23, 2011 at 10:32 pm

      Simply put? Don’t use it? You lose it! And, most neuros somehow overlook that necessary NEED to get moving and using yourself!
      Nerves have likely been damaged, or worse, and muscles are in approaching atrophy from lack of use. They must be used to regain circulation and motor control then aid in nerve regrowth to re-connect the rest of the incredible human ‘network’ that is in ourselves.
      I hope and pray that you find super understanding and talented therapists to work for your Marshall! And not the ‘GungHO!’ sort that wants 50 reps off the top. ICK!
      When I’ve had PT? I’ve found 2-3 times a week worked well for me, gave me time to ‘recover’ from the one day and get ready for the next? Also, be sure to ask if there are some sorts of home exercises that can be done safely and are ones a body can ‘build up on’ in terms of gaining strength. I’d found these helped me progress a lot faster? Because I didn’t have to ‘do’ them all at once? Just do say ten reps now, 15 later and on up. It’s also less boring?
      With the PT? I found I got stronger as I went along w/the program? BUT…. when I was due for my IVIG? I was definitely LOW on energy, until the next infusion.
      In the end? It’s got to be up to Marshall to decide if he’s too uncomfortable in the trying or the doing. There are lots of exercises that can be done just sitting that can build and strengthen muscles to the point where it’s less unpleasant. Work with the pros to get around it all and get some progress?
      My heart is with you, I’ve CIDP, but I’ve been immobile a few times more than I have wanted to be. I don’t LIKE it one BIT. Sooo? Make it a new journey? One of progress, I truly hope for. Keep heart and don’t give up!

    • March 24, 2011 at 8:43 am

      Hi Patty

      Sorry to hear that you and your hubby are still struggling, it will be a long recovery but it can be managed.

      On the physical side, I am in the ‘use it or lose it’ camp. I fully believe that while copious amounts of rest are essential, so equally is getting up an doing whatever exercises possible.

      A good PT will start with ‘baby steps’ i.e. walking, using arms, etc. But I found that throwing myself at life was physio-therapy. Making coffee, sweeping the kitchen floor, whatever-household chores acted like PT sessions. Also, ‘aquatherapy’ or swimming as we used to call it is excellent. All muscles get worked and the water feels good, ditto for hottubs.

      Another crucial factor is stretching and massage. Alice (another wonderful member) and I were just talking about the importance of this. The stretching might have to be done by the PT for a while, go to sessions and see what they do and learn. With GBS the body tends to feel as though the muscles are shrinking or shrivelling up. Stretching brings some relief and I think important to helping the muscles stay active.

      Massage has also been very important to me. It feels sooo good, even though it was painful. But NOTHING felt as good. My MT is a wonderful, professional masseuse and knows how to chase down knots and pains. If you know what you are doing, your hubby will be grateful and it will help.

      More than anything, I suggest you cling to hope. It is far more likely that he will recover, but it will SEEM like nothing is happening for long periods of time. I have found that parts start working even without my knowing it. You have to celebrate every little inch of recovery.

      For example, I produce a rock concert performed by middle-school students once a year. During rehearsals, I often have to get involved with them especially the younger ones. Last jam a little guy (with a beautiful monster of a guitar) kept blaming his guitar for his inability to play (it was an obvious lack of practice). I asked to see his guitar and blasted out a perfect Ramones riff. It startled me and many in the room. My colleagues noted that this simple musical moment couldn’t have happened even a couple of months ago. I have been replaying the moment in my head ever since. It was wonderful.

      This helped me realize a lot of things. I can pick up my boys and give them a big bear hug, whereas I didn’t even want to be hugged post IVIG (too painful). I have started to be able to feel my wife’s hand again and this is most wonderful. These are all simple moments, but I keep a sharp memory of where I was and where I am.

      Feel free to call if you or hubby want to talk


    • Anonymous
      March 24, 2011 at 10:47 am


      That brought tears to my eyes, that you could play the guitar and feel your wife’s hand again….there are so many stories of adversity and sadness on here. It is so nice to hear a positive one and one of recovery. It really tells you how important hope is….to never let it go. Thanks for sharing. That made my day.