trouble with the bladder

    • Anonymous
      September 26, 2009 at 9:03 pm

      How many people are experiencing this? it happens intermittingly. Usaully when there is some kind of infection somewhere in my body. I have been to continence therapy. I am very upset with myself. the y think i might have kidney stones. I am also taken a new antibiotic for a skin condition. I dont know what to do. I am supposed to see a urologist next week. My mom wants to put me back in depends. I worked so hard to get out of them before. I ju st feel i am getting worse. the tingling has been strong lately. My mom is leaving to go on a trip. she thinks this is happening because she is leaving. actually i am glad she is going she needs a break, and so do i. the symptoms have been getting worse over the last couple of weeks but i havent said anything about the tingling. I was hoping it was becuase of the possibility of kidney stones but now i am not sure. I am getting frustrated. thanks for reading. amy

    • Anonymous
      October 5, 2009 at 6:16 pm

      I join you in your frustration – this has been an ongoing problem for me for the last three years. It had it pretty much stopped then I got sick for a month and the flood returned, I got better and it got better, then I got sick again and now it’s back to the flood again. Be patient – its the last thing on me that showed any signs of improvement and the first thing to go when I get sick again. 🙁 It’s annoying, frustrating, socially challenging and just downright a pain to deal with BUT the fact that I am female and used to wearing (ahem) “absorbent materials” monthly… it wasn’t as hard to adjust to as it would have my husband. 😉


    • Anonymous
      October 7, 2009 at 6:21 pm

      besides having a respritory infection, bladder is doing ok. the vesicare seems to be working. still trying to get the stone taken care of. i am having a little trouble weith numbness and tingling but that must be due to the infection. Dr gave me something for my cough but it cost $50 so i bought something over the counter maybe i can get some sleep. I havent been able to to go to work or the Y because i ahve been sick. going a little stir mom is in europe for 16 days. so i am home just with my dad. well better go lay down. thanks for reading. amy

    • Anonymous
      October 8, 2009 at 6:25 pm

      first on list for when machine comes back in the area.(for the kidney stone) vesicare still doing its job yeah.still have upper respiratory infection z-pack and prednisone didnt do it i will call dr tomorrow to see what else we can do i just dont feel well. i hate being sick. i did go to work today so at least i got out of the house. not strong enough to drive so my dad is my driver. thee tingling and numbness is getting stronger hopefully once i get those issue under control it will subside.

    • Anonymous
      October 9, 2009 at 9:34 am

      It’s very common to have a flare up of symptoms when you are sick.

      My recommendation would be again to push for some sort of treatment. Your immune system is ramped up to fight off the infection, thus creating more anti-bodies to attack your myelin. Unless you can get that under control your nerves are going to continue to be attacked & may cause irreparable damage.

      Going to the dr when you are in a flare like this is a good idea.

      I think it’s a bad idea for you to be working right now. Not only are you spreading your illness to your co-workers but you are putting yourself at great risk. You need to rest. Your body is being damaged & the more stress you put on it the worse you are going to feel.

      Stay home & get well then worry about work.

      Hope you feel better soon.

    • Anonymous
      October 11, 2009 at 6:47 pm

      still coughing. over the counter stuff not working anymore. spent most of today sleeping. numbness and tingling growing stronger will call dr tomorrow. using crutches to get around. stone still bothering me. vesicare is working yeah!!! kinda bummed that i keep getting sick. i try to be so careful in public places. but my immune system sucks. thanks for reading amy.

    • Anonymous
      November 1, 2009 at 4:21 pm

      finally got over the coughing. bladder still am issue even with vsicare. supposed to get stone taken care of this week. then IVIG. yeah.i am really tired. i dont know if it is my body or my head.

    • Anonymous
      November 4, 2009 at 2:26 am

      Borrow 50 bucks from your mother to buy you some good cough medicine that will work for you. You can’t be bothered with a cough when you need to be resting. Your Mother can go to Europe; she has the money to buy you some much needed medicine. Just my thinking Amy. I hope I am not judgeing your situation wrong ?
      God bless Amy,

    • Anonymous
      November 5, 2009 at 5:51 pm

      cough is gone but vesicare isnt working the dr just upped my dose to see if that will do the trick. kidney stone taken care of monday and then we start IVIG. i hope that this takes care of everything.

    • Anonymous
      November 7, 2009 at 2:43 pm

      vesicare not working anymore. still having issues. lithotrypsy is monday at 8am. numbness and tingling getting stronger but IVIG is only a week away. just got to stay strong for a couple more weeks.

    • Anonymous
      November 9, 2009 at 7:34 pm

      I am still in a lot of pain. Now just waiting for the stone fragments to pass. that is the fun part.

    • Anonymous
      November 16, 2009 at 6:04 pm

      stones are gone but vesicare no longer working having mri of my pelvic floor in am neuro wants to check to see if cidp is progressing or if it is something else

    • Anonymous
      November 18, 2009 at 7:36 pm

      went for an MRI of my brain. to check to see if CIDP has progressed. no other cause for incontinence.wish me luck i am very scared, get results in morning.

    • Anonymous
      November 21, 2009 at 5:41 pm

      lithotrypsy was a success passed stone incontinence better.

    • Anonymous
      December 6, 2009 at 3:44 pm

      still havent started IVIG but passed stone. going to urologist tomorrow to turn in stones and get final ok for IVIG. hopefully will start soon. been to infusion center and met staff and to ckeck the place out. h ave people and things lined up to keep me entertained for the infusions.

    • Anonymous
      December 25, 2009 at 11:59 am

      stone still there. appearently only chipped the stone with the first round of lithotrypsy so have to do it again. still havent started IVIG. 1 waiting on stone then there is a matter of paying for it i am on medicare. dr is trying to get it paid for. bladder still an issue now they have given some topical gel that is supposed to help. i am very frustrated. this is not helping my depression issues to say the least.

    • Anonymous
      December 27, 2009 at 8:01 pm

      appearently they just chipped the stone with lithotrypsy/ because stone is still there so i have to have lithotrypsy again. no word on IVIG not until stone is gone. bladder still an issue even with vesicare now they gave me some type of cream to put on my belly to supposedly help. i am very frustrated and depressed. this has gone on too long. i thought this would be all done before the holidays. 1 step forward two steps back. i am back on my crutches. and having trouble using my hands. the tingling is really bothering me. i try to do my regular routine like they tell me to do but i am exhausted. i was using my sleep apnea machine but apperantly it is causing me nose bleeds. will call dr tomorrow. thanks for listening to me whine. Amy

    • Anonymous
      January 3, 2010 at 6:55 pm

      Amy, bless your heart…I will keep you in my prayers.

      Love and prayers,
      Drummer Dude

    • Anonymous
      January 6, 2010 at 5:59 pm

      no word from doctor yet on second round of lithotryspy. went to gyno today seems i hace a fibroid tumor in my uterus and she is not sure if she is goig to do anything right now it is very small but i am hving some pain. also looking at a procedure to stop my periods forever. at least that would be a lot easier considering on how my hands dont work to well right now.

    • Anonymous
      January 9, 2010 at 7:39 pm

      tingling getting stonger and now my stomach is hurting had some kind of b ug according to the dr. but it still hurts i think it is because of all the stress i am under. iwant to feel better but instead i am getting worse. i am very frustrated and getting depressed. having a hard time motivating myself. I just wish i could go back 4yrs. I would make them listen to me when i said i was getting sick. and maybe we could have avoided GBS altogether or at least treated it properly. but i guess this is my lot in life. I am going to stay on top of this stone issue. I am going to start calling the dr at 8 am on monday morning.

    • Anonymous
      January 21, 2010 at 7:50 pm

      stone still an issue. supposed to have lithotrypsy again. incontinence still an issue dr upped my vesicare. (the gel made me “crazy” couldnt stop crying) back to using my crutches full time. my aunt died so that isnt helping the crying issue, funeral is in atlanta we leave tomorrow and come back saturday night maybe sunday am. i am not sure i will be able to handle this. Still set to have ablation on monday. seems like a lot going on at once.

    • January 21, 2010 at 11:26 pm

      Have you gotten ivig yet? If I were you, I would just go to an er you have never been to and adress you stone and cidp and any adjustments you may need with your other meds. good luck.
      Dawn Kevies mom

    • Anonymous
      February 3, 2010 at 7:32 pm

      supossed to go to urologist for a check in before lithotrypsy. Had a barium swallow done this morning seems there is something wrong withh my stomach. I am still in a lot of pain. numbnmess and tingling pretty strong still. IVIG after stone is gone and they figure out what is wrong with my stomach( had three pre ulcerous spots before GBS) still doing okay as far as my bladder. I go as often as i can.