Very Confused

    • Anonymous
      April 19, 2007 at 7:00 pm

      :confused: In 1999 my brother in law was stricken with GBS. He was in the hospital for 9 months. He was going to be transferred to a nursing home but he absolutely refused. My father in law brought him home, but made life way to easy for him. My brother in law refused to go to physical therapy. He would tell some he didn’t want his father to take him in the snow, and tell others that he wasn’t up to it. He had a colostomy and a urine catheter (still has both) Now 8 years later he still hasn’t gone to therapy, he still has a colostomy and catheter. He feels “sick” every other day, but if you force the point he gets “better” within a matter of minutes. We thought he couldn’t walk until we happened to catch him moving about without his wheelchair (this was in 2001) He is a large man 450lbs or more so his inability to walk, while I understand he is weak and unstable is more likely due to his weight and his refusal to exercise. He uses his GBS diagnosis whenever he doesn’t want to do something. All this was his business until this past Nov when his father passed away but now this is my problem along with my husbands. He gets depressed or “sick” if we push the point. He will not allow us to go to or talk to his doctor. I know the ER is not happy with him since he goes in once a month to get his catheter changed and they feel it should be off of him or he should handle this himself. How have other caregivers dealt with the problem when the patient, who before this time was never a patient, decides they like the attention? I told my husband that there will come a day when he really is sick or really is having a relapse and I won’t believe him and this scares me. Any help or advice would be appreciated.

    • Anonymous
      April 19, 2007 at 8:48 pm

      Hi Missy,

      You cannot judge someone until you try walking in someone’s GBS shoes.

      You have no idea of the chronic pain GBS cause and it stays with the patient for the rest of their life. I do agree that your BIL needs therapy but how can you force someone to have therapy, answer you can’t.

      Maybe a family powwow, tell him you will consider putting him in a nursing home to get the proper care he needs, maybe that will wake him up. Force that issue and see what happens. He does need to help himself to a certain extent in area he can handle.

      Most GBSERS can walk but still need their wheelchair, walker or canes. Some need braces called AFOS. The weight issue is very bad for a GBSER, not only does he have to deal with GBS but the weight is causing wear and tear on his knees. Does he take any medications? Having a colostomy bag and a catherter is the norm for some GBSERS.

      I am sure you will get alot of answers to these questions .

      Take care. 🙂

      P.S. You can post in the GBS threads too, just sometimes alot of the patients don’t read all the posts in the other forums, so feel frre to go there too. Probably alot a better if you do.

    • Anonymous
      April 20, 2007 at 11:33 pm


      As someone who has several serious illnesses I want to jump in here and defend your brother-in-law. However 🙂 . I have met several people and I don’t mean GBS/CIDP people necessarily, whom use their illnesses for sympathy, help, or whatever the case is. If he was in the hospital for that long then he definetely had a very severe case of GBS which I would guess did a great deal of damage to his nerves. That being said, it doesn’t sound like he wants to get better in my opinion. PT and OT are crucial in helping us recover, his weight I am sure is a huge burden on his muscles and nerves.

      If he doesn’t want to recover he won’t, you can’t force him either. This forum helped me a great deal 3+ years ago to know I could get better. He has to want it though.


    • Anonymous
      April 21, 2007 at 6:43 pm

      I understand what Brandy and Jeremy have said. Believe me I do feel for my bil, I get so mad when he wants me to get something or do something that he can do with a little effort. I read some of what other’s with GBS have written and it seems so important for some of them to do for themselves with a little help from others. They seem to find hope when they find they can do things and my bil doesn’t even want to try. I end up feeling used and very unappreciated. We can go on a trip to someplace close or 500 miles away and he prefers to empty his urine bag on the parking lot ground instead of using his walker to go to the bathroom and do this, yet he will use his walker to go to Walmart (then get a riding cart) because he likes to do this. At what point and to how far do I say enough is enough? I don’t want to hurt him because this has been traumatic for him, but I feel that I am enabling him not to get better. I know I cannot force him to get better, nor can I force him to want to try to get better, but I cannot in good faith or my sanity allow him to use me either. I’m scared of making a terrible decision. I’m scared because I do not know how bad he really is vs reality. I know he can do things because I have seen him do them IE walking (with some difficulty) getting his own cokes, using his home bathroom, walking to his room to play video games etc. His weight has gone up probably over 100lbs since this happened. He only eats, drinks cokes and smokes (3 packs a day) and watches TV. He can get to the local market to get his cigs. He used to walk in to get them, but now the girls bring them to the car because they feel sorry for him. I feel like I am going to go crazy if I don’t know what boundaries to set or what boundaries are safe to set. I don’t want him to relapse and be even worse. Please I really need some more advice.

very confused

    • Anonymous
      October 25, 2006 at 5:46 pm

      Well, I just had a ncv test on my legs and lower back, and the doctor told me that everything looks good. Now I’m really confused. All symptoms are getting worse (slowly but progressively). What do I do now?

    • Anonymous
      October 25, 2006 at 6:11 pm

      Are They Ssaying U Have Cidp?

    • Anonymous
      October 25, 2006 at 6:18 pm

      The neurologist hasn’t commited to anything yet. I had an MRI that came back normal. I’ve made an appointment to see him to discuss the next step in finding out what is happening to me. Will ask for a spinal tap to test for proteins in fluid. If that comes back normal – I’ll be really confused.

    • Anonymous
      October 25, 2006 at 6:48 pm

      Hello Gabby,
      The first thing to do is to go through all the tests, which usually are blood work (mainly to rule out things), EMG’s, NCV’s, MRI’s and for many of us, the spinal tap/lumbar puncture is done last. The spinal tap was what gave a confirmed diagnosis of CIDP for me. If you feel okay about telling us where you live, there might be another member who lives near you.

      Welcome to your new family, where we feel what you feel. Many of us have a difficult time getting a diagnosis or are mis-diagnosed.

    • Anonymous
      October 25, 2006 at 7:08 pm

      Hi Gabby, my CIDP was diagnosed based on:

      1. Symptoms: lack of knee jerk, ataxia, no sensation in feet, reduced sensation in legs, some muscle weakness in feet and legs
      2. Spinal tap: increased protein (not necessarily an indicator of CIDP, normal protein would probably rule it out, though)
      3. EMG: demylination, some axonal damage
      4. MRI of brain: unremarkable which excludes MS
      5. bloodwork to exclude other diseases

      an additional blood test for paraproteins showed high titre of antiMAG IgM indidcating a CIDP variant

      I think an EMG would be important for a correct diagnosis. Nerve biopsy turned out not to be required in my case

      Earlier this year I saw an oncologist to rule out malignancies.

      Take care

    • Anonymous
      October 25, 2006 at 8:04 pm

      Hi norb,

      Just thought I’d mention my dx was made without elevated proteins in the spinal fluid.

    • Anonymous
      October 25, 2006 at 11:06 pm

      Gabby, don’t live your life around a dx. i still haven’t gotten one either, its been over 1 year for the first and second paralysis events. a dx may not be known for whatever reason, since there is no test that will 100% tell you what is going on. Get plenty of rest and take care of yourself. 🙂

    • October 26, 2006 at 12:42 pm

      Here are a couple of sites that tell how doctors diagnose peripheral neuropathies.

      Throw in additional illnesses or non standard symptoms and you can see why it takes so long to get a firm diagnosis of CIDP.

      Hang in there,

    • Anonymous
      October 26, 2006 at 6:18 pm

      [QUOTE=JohnC]Hi norb,

      Just thought I’d mention my dx was made without elevated proteins in the spinal fluid.[/QUOTE]

      Thanks, John, for mentioning it. Always learn something new.

    • Anonymous
      October 27, 2006 at 7:36 am

      Hi Gabby
      Have you considered that you may have anxiety or depression? Frankly, who wouldn’t with this dease?! I ask because I mentioned to my neurologist at my last appt that I was having difficulty breathing and swallowing periodically, to the point where it was keeping me up at night. He asked a barrage of questions, and finally suggested that I may be having anxiety attacks. Evidently, with CIDP, the breatihing and swallowing issues wouldn’t come and go the way they were with me, and would be accompanied by things like food getting trapped in my mouth. Yuck. Antidepressants to treat the anxiety did in fact help enormously. Just a thought.
      Helen 🙂