Kinda Lost

    • Anonymous
      October 19, 2013 at 10:53 am

      Mt name is Josh I have GBS and am from South Dakota but according to my neurologist there isn’t a qualified hospital in my state for treatment. I am wondering if anyone knows how I can go about getting out of state of treatment. It looks as though surgery on my Achilles tendons is almost certain
      but still need some sort of rehab after. Any information would be great. I was also wondering if anyone’s sleep was affected by this disease? It takes me an hour or two minimum to fall asleep which is quite frustrating. I am looking into the Denver, Colorado area as I have a cousin willing to help me out for awhile there. Any info on doctors, hospitals, or even who I can contact for help is what I am looking for. Thank you all for your help. Best wishes to all.

    • October 19, 2013 at 3:51 pm

      Hi Josh, check out the foundations list of people who have had gbs orcidp and are willing to help others, there used to be a person in South Dakota I think if not SD then ND. Also you do not give all of your specifics ie how you were dx or your duration of illness. I only ask this because you mention the surgeries. Have you been tested (blood test) for CMT, Charcot marie Tooth? People with CMT present diagnostically similar to gbs/cidp, we fell into that category. With our first ncv/emg we were told it was cmt only to find out the ncv/emg study is the same for gbs/cidp and cmt. After the spinal was how we were able to confirm. Check it out what do you have to lose?

    • GH
      October 19, 2013 at 5:43 pm

      There is a Denver chapter of the Foundation:

      Kristen Bueb
      (303) 881-4622

      If you are west of river, there is a contact in Sturgis:

      Mrs. Ann Hubbard
      (605) 720-4915

    • October 19, 2013 at 5:51 pm

      Hi Josh, early into my GBS I too had difficulty falling to sleep and staying asleep for more than 2 hours at a time. But it does get better. Take care.

    • GH
      October 19, 2013 at 5:52 pm

      Were just recently diagnosed? Early treatment (usually IvIg is essential, because it generally leads to better recovery. You haven’t given much information, but if you are thinking about tendon surgery, it sounds as if you have had it for awhile. I would want to avoid surgery if at all possible. In fact, I did avoid surgery. When you have foot drop, it is essential to support the foot and have regular physical therapy to preserve the range of motion. Restoring the range of motion after you have lost the 90° position (standing erect) is difficult. I was fortunate to have had a PT who kept on my case to protect my ankles.

    • GH
      October 19, 2013 at 5:54 pm

      As for sleeping, I never worried about it. There are much more important things to be concerned with when you have GBS.

    • Anonymous
      October 20, 2013 at 2:06 pm

      I was admitted into the hospital almost 3 years ago now. I spent about two months in there while they were telling me all the things it wasn’t. The first treatment was the immunoglobulin but it seemed the disease still progressed. After that it was plasma pheresis which at least stopped it from getting worse. The doctors in Sioux Falls couldn’t decide between gbs and cidp. A year and a half later I seen Dr. Windebank at the Mayo Clinic in Rochester and according to him it was the most confusing case he had ever seen because I lost use of pretty much everything but my breathing was never affected. The nerve biopsies (2 of them) showed that rather then eroding away at the myelin it attacked the core of the nerves and worked it’s way out. I was originally planning on visiting Sister Kenny’s in the twin cities but couldn’t get any aid for it. As for my Achilles needing surgery it’s because of how they were out of use for so long and I couldn’t get into physical therapy. Sounds like they just basically stretch the tendon surgically then I will need braces on my legs for awhile. I do use a walker now rather than a wheelchair but can only walk a couple minutes before getting dog tired. I walk like a raptor on the ball and toes of the foot but I am grateful I got this far. I went through 5 lumbar punctures so hopefully they got it right. Three of the puncture were in Sioux Falls and the other two in Rochester. I was also wondering how physically limited the typical person is after treatment? The reason I ask is that the only work I know is all physical and taking classes for something new doesn’t excite me at all lol. If there is anything other information I may have overlooked please just ask. I am so glad I finally found this site. It’s a relief having others who can understand the things I am going through that my family, friends, and doctor just can’t quite grasp. Thank you all so much for all the responses and contacts! Best wishes.

    • GH
      October 20, 2013 at 4:54 pm

      Your case is not that dissimilar to mine. I, too, was paralyzed, but without breathing impairment. I was diagnosed as GBS, then changed to CIDP. But it doesn’t matter what you call it, because at that stage the treatment is the same. The spinal fluid test doesn’t distinguish between GBS and CIDP, but supports either diagnosis. It seems that you were treated appropriately for it, except that physical therapy seems to have been neglected. I had physical therapists looking after me soon after I was hospitalized, with particular attention to preventing contractions in my ankles.

      If you have progressed from immobility to a wheelchair to a walker, you should expect to keep improving, but slowly. There is no way to tell how far you can go — you just need to do the best you can. When I got out of the hospital I was still using a wheelchair, but could use a walker at home. When I started going out with just a cane, two blocks was an effort and anything more seemed daunting. Now I walk without a cane and can go considerably farther without getting exhausted. You have to get there step by step, literally and figuratively. You must avoid overexerting yourself during recovery, so a job with much physical labor conflicts with that. But your strength and endurance should improve. How much and how soon only time will tell. You need to decide how to get your foot position back, and have the patience to rebuild your strength.

      How far off are your tendons? Has a physical therapist measured the angle that your feet can reach before the pain is intolerable?

      It seems to me that the hospital in Sioux Falls is not up to speed on what needs to be done for patients who have foot drop. Waiting until they are discharged to get physical therapy is not sufficient. Somebody should follow up on that.

      I wish you the best in your recovery. Stick with it and make the effort to make the best recovery you are able.