Urine problems

    • Anonymous
      March 3, 2010 at 11:53 am

      I got GBS in aug of 08 I was on a vent for a month an a feeding tube for 3 months I was mable to walk 4 months later an now .
      My problem I i’m really having is that after I urniate I’ll dribble for 10 minutes or so. I don’t leak unless I use the restroom an I have to change underware 5 an 6 times a day.
      Does anyone have this problem an what are you doing about this.
      As of right now I’ve been using the VA but they are not helping any

    • March 3, 2010 at 12:14 pm

      Hi Kerwin,
      Many people have issues with their bladder, it is called a neurogenic bladder the peripheral nerves on the bladder are affected by the gbs. Have you asked your doc for a medicine? Good luck!

    • Anonymous
      March 3, 2010 at 12:18 pm

      You may need to see a urologist, like Dawn mentioned, for medication. I had some urgency issues, (pressure) and was told by my neuro, to go to an uro. Mine comes and goes, so I haven’t followed up on it yet, as I am tired of docs right now. 😉 I believe that there are meds they can prescribe to help with this. You can google neurogenic bladder and find a lot of info.

    • Anonymous
      March 3, 2010 at 2:42 pm

      Both my neuro and my Rehab doc were very worried about bowel and bladder problems – they seem to be common with GBS. If your doc does not seem concerned ask him why he doesn’t think it is a problem. Put him on the spot – be assertive (not agressive) with your health care. If you get answers that don’t seem right, or incomplete ask for more info. Doctors need to know you are interested and an active participant in your care.

    • March 3, 2010 at 4:01 pm

      Regarding your comment about being sick of docs. Do you think it is unrealistic to expect the neuro to know that the bladder becomes neurogenic which is a manifestation of the gbs/cidp? I don’t! I too am sick of docs passing us from one to the other. Any questions about how the ivig modulates and t-cells, well, that is the imunol. Stomach issues because of gastro paresis thats the gastro, headaches, oh, that is stress….see a shrink….on and on.. I am just baffled why it took me so long to figure out that we are just pawns. Honestly, all the research I am reading shows the stomach as the common link as this is where the imune system is. So maybe the gastros should just get it together. Honestly if you think about it if you can find a good primary, they can take care of everything as they look at the system as a whole. They do not have tunnel vision like the specialists. Oh well, just venting as I mentally prepare myself for tomorrows appointment with the naturopath. I have to figure out how not to waste time talking about the worms when he brings them up and focus on the results of the tests and probiotics to beef up the stomach. Until the worms are legal in the US I am not going to consider them. FYI, it might be sooner than later as they are in phase three trial. If you google Joel V. Weinstock, he talks about how he, the fda and big pharma are already in the works. Uof Wisc opened up another trial Feb 5th lead by a neurologist testing the worms on MS patients. i spoke with someone who has sjrogens and cidp and he too is seeing progress, he is off his sjrojens meds and is going to start weaning off ivig to see if it helped the cidp. if it has helped ms, it HAS to work for cidp! Sorry for the rant, just a bad day! Kevie had a rough treatment yesterday.

    • Anonymous
      March 3, 2010 at 4:42 pm

      Hang in there Dawn….You have been doing such a great job for your son.

      I too am tired of how the docs just pass you on to another doc. My theory is that the NERVES caused all of these other problems…..I have been told by neuros to go to a gastro, a urologist, my primary care doc, an eye doctor, and so on. It is ridiculous. The nerves caused all of these other problems, so why can’t they get to the root of it all and fix that, and then poof, you wouldn’t have all the other issues. Guess it is not that simple….

    • March 3, 2010 at 5:35 pm

      I think its the gut that wrecked the nerves via neuro toxins that escape via the leaky gut who knows what do we know we are just stupid moms! Ok, I promise no more whinning. I am so sick and stressed over this crap I have 2 cold sores I am glued to the toilet and I just want to sleep! Thanks for listening!

    • Anonymous
      March 4, 2010 at 12:08 am

      The incontinence of GBS is common to us; maybe some sort of pad (Lightdays Long, or Poise) would be the answer until more healing happens; easier that changing underwear several times a day. It takes time to heal the bladder and bowel muscles, but I can say I’m a lot better off now that I was at first.

    • Anonymous
      March 4, 2010 at 11:16 am

      The va doc gave me some meds but they have had no effect what meds are some of you taking

    • Anonymous
      March 4, 2010 at 11:22 pm

      Dear Kerwin,

      The peripheral nervous system is divided into the somatic nervous system and autonomic nervous system. The somatic nervous system is responsible for coordinating the body movements, and also for receiving external stimuli. It is the system that regulates activities that are under conscious control.

      The external sphincter muscle of urethra, located at the prostate, is a secondary sphincter to control the flow of urine. Unlike the internal sphincter muscle, the external sphincter is made of skeletal muscle, therefore it is under voluntary control of the somatic nervous system. This is where your problem exists.

      Do you urinate standing? My suggestion would be to set while urinating – this would create a gravity flow to clear the urethra and possibly cure your problem until you get the proper medication. Set for about 5 minutes for good drainage.

      Best regards.


    • Anonymous
      March 5, 2010 at 3:48 pm

      thanks for the advice I have tried sitting but not for that long
      my wife was wondering if it was damage from being on a cath for 4 mo’s
      I’ve tried some meds but was wondering if many other guys out there had the same problem an what meds they were taking or what they were doing

    • Anonymous
      March 7, 2010 at 6:44 pm

      This past year I’d had a serious injury and was bed ridden for over a month! Let me tell you between that ‘bed rest’ and a long surgery? It took a loong while to recover ‘control’. Things are truly better now? I believe the five hours+ under anethestics likely was a factor..can’t prove it tho. Your body acts/reacts to such stressors! I’m on track now tho, you can be too! With some help.
      But between the stress of the surgery, injury, recovery and just trying to LIVE? It wasn’t easy at times…. Timing is everything? From ‘liquid and solid intake to outake’ and when what might ‘hit you’. Not to mention? Possible consequences…it’s the loss of self, pride and independence hits you where it hurts most. Now that I am ABLE to walk w/a cane to the ‘facilities’? It makes it soo nice! I wish this for you soon as well.
      Let the specialists determine what if any damages are done? And maybe there are meds or exercises that can help. Could be simple? Like a UTI? or more complex such as autonomic…but get tested FIRST then sort out the worry or coping factors. That’s what specialists should help YOU with. Expect it and ask for ways to ‘cope’!
      YOU and only YOU will know what works or not? But some things don’t work RITE away! Just like our meds. Keep a secret diary and track such things and see if there is even a little bit of progress. BTW? I’ve grown to HATE the crinkle of Depends! No longer wear them, but HATE that sound.
      Keep faith and hope always!