Still self cathing, please help

    • Anonymous
      November 21, 2007 at 11:31 am

      I am new at this, just 3 weeks into GBS, and fortunately with a mild case compared to so many of you.I have only lost my lower extremities, however along with that I have lost the function to urinate.My first question is this common with GBS and second, is there anything I can do to facilitate or expedite the return of this function?
      Thank you for any responses or help!

    • Anonymous
      November 21, 2007 at 11:56 am

      Hello and welcome

      Unfortunately it is relatively common to lose that function, and unfortunately it you can do nothing to expidite the return of that function until it’s ready to return back to normal. There are medications out there that can be tried to allow you to urinate on your own – but as I said, I dont think that would be considered functioning on its own. I stand to be corrected here as I wasnt taking down notes while it was being explained. The medications (and I think 2 were mentioned), I think, loosens or relaxes the bladder and allowes the urine to flow. I’m not sure if you would be able to control it yourself as they didnt speak to that. However, apparently it doesnt always work and it causes side effects like constipation – which may already be a big problem for you. Obviously if you speak to the doctor about this you would have to weigh the pro’s and con’s, as I’m not sure you would be able to actually ‘feel’ when you need to urinate.

    • Anonymous
      November 21, 2007 at 12:11 pm

      imo yes it is connected with gbs. I did not however lose the ability to urinate just the ability to control it. Got it back after 6 weeks in ccu and a week in rehab. I am glad that you have a mild case but don’t overdo it cause it has got to run its course. If I might ask what did they treat you with ivig or pp?

    • Anonymous
      November 21, 2007 at 1:22 pm

      I was treated with IVIG only 36 hrs after the onset of my GBS. In my case, My symptoms and paralysis came upon me in just 12 hrs. After five doses of IVIG I thought my recovery was going to be quick, but I was sadly mistaken as progress was halted short of walking and having control of my urinary functions.I hope I don’t sound greedy as I know I am very fortunate not to have it as bad as many others I have read about on this forum. I am a very active person and it is just extremely frustrating for me at times. I know I must be patient, and thankful. I am glad I found this forum and will monitor it frequently for suggestion and or advise!

    • Anonymous
      November 21, 2007 at 4:21 pm

      Welcome AV8TR! I am glad you are posting to the forum. Your questions will help others in the future. Are you still seeing your Neuro regularly? He might want to follow your progress closely. I am sure he will also be in touch with other doctors to follow up on all your blood tests and progress or functions. They also can give you some exercises in PT to help get function back as those areas get their feeling back and function increases. Many have had bladders that don’t completely empty or leak or don’t give you any warning that you have to void. Please be patient. GBS does also stand for Getting Better Slowly.

    • Anonymous
      November 21, 2007 at 4:36 pm

      Welcome to this Forum, They are a great group of people and can answer a lot of questions you might have! I was also very active and it was one of the hardest things to deal with in the beginning. I was soooo slow with everything. You will develop patience though:) The bladder control also should come at some point too as you heal. But everything is on it’s own pace. I will suggest at this early stage to keep a journal of what’s going on with you and how you feel so you can compare later to realize that you have made some progress. It is one of the things I regret not doing, thinking it would be gone in a week or two. Have a blessed Thanksgiving! Gabrielle

    • Anonymous
      November 21, 2007 at 6:42 pm

      Hi Av8tr, Welcome to The Family. I know how frustrated you are feeling. I have been dealing with a similar problem since my first paralysis in Aug 05. I use my mind to control the functions of my bladder, for instance in the a.m. I remember how I use to have to go the bathroom really bad-I use that thought everytime I go into the bathroom-for the most part it works. Its a matter of getting to know how to use biofeedback with all of the muscles in your body. Until yesterday I have had No feeling in my bladder-to my surprise I felt a twinge after my nap. It was a small Big new as we say. Don’t give up, stay positive and use your mind alot. I do have other nerve alerts that came up after Aug 05-I get a certain type of pain signal in my kidney/right lower back area which goes away after I go to the bathroom. It sounds weird, but that is me, and if it works it works.;)

    • Anonymous
      November 22, 2007 at 9:59 am

      Thank you all! I will be seeing my Neuro in about week for my first follow up. I will also be seeing the Urologist again also soon. There is something I cant get out of my mind though. The last time I saw the Urologist, he hinted very subtlety, that I may never gain that function back. I let it blow right over my head at the time as that would be incomprehensible or unacceptable to me. I just could not fathom that.Could this be true though. My fears sometimes get the better of me!
      Again, thank you for all your suggestion and help.
      Happy Thanksgiving Day

    • Anonymous
      November 22, 2007 at 8:48 pm

      Hi AV8TR!
      Guitarman had the same problem.That was his first sign of GBS.His bowels also quit. He had to be on strong laxitives to get them to work. He had a catheter for about 14 days,before and while he was in ICU. When we went to the rehab. hosp. they removed it and cath. him about every 4-6 hr.,trying to ‘wake’ his bladder up. This went on for 3 wks. The day before he was discharged it started working! Thank God! They had trained me how to do it as he was unable to anything else on his own. What we have read and heard from other people,no one’s recovery time is the same. There is always hope. We know this is very flustrating,things seem to work so slow. Hang in there!
      guitarman’s wife

    • Anonymous
      November 23, 2007 at 9:58 am

      Av8tr, Know one knows for sure what will come back and what won’t come back. I still have some problems with my bladder and bowels, but after 2plus years I am just now starting to get a small amount of nerves back, its nothing permanent yet, but its a start. You might have a quicker recovery than I had or it may take you just as long. Remember you are just in the beginning of your recovery stage. There is no way of rushing the nerves, recovery will come in its own time, could be tomorrow or in years to come, there is no way to predict what and when things will recover. You might have to get use to a new normal, alot of us have a new normal. One thing that is very important is a positive attitude along with plenty of rest. Not enough rest and pushing things too far, too fast could put you into a backwards slide to a relapse. You will have to get use to limits, its really hard but it is important to listen to your body. Take life one day at a time and keep trying small things, you will do just fine. Take care.:)