Thread: Ok-I'm Bad!
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Old 10-28-2010, 10:11 PM
TRESA TRESA is offline
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Join Date: Sep 2010
Location: Kansas/Texan
Posts: 144
10 yr Member
TRESA TRESA is offline
Member
 
Join Date: Sep 2010
Location: Kansas/Texan
Posts: 144
10 yr Member
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Quote:
Originally Posted by art chick View Post
Hi Tresa, I have MG and you are the first person to bring the urinary issue up that I totally understand!! Before I knew anything about MG, I had 2 situations where I lost bladder function--when I was catheterized. One was an undiagnosed MG crisis and one was after ob/gyn surgery. My urethra froze up and I could not open it to go so after they took out the catheter so my bladder filled and almost burst which was excruciating while the hospital was trying to assess how full it was with an ultrasound machine. They did not believe I couldn't go and had to keep recatheterizing me. Then it filled again. And so on. The way I got off the catheter and started "feeling" the flow again was an acupuncturist placed a needle directly over the bladder area during a treatment and it cured the situation in one session both times.

Also, I couldn't feel if my bladder was full or empty or whatever before I was in MG crisis and in the hospital. When I got there, they had me "empty my bladder" and then when they did an ultrasound of my uterus (I had adenomyosis and fibroids that they missed!!) they said my bladder was full still. I was baffled.

I really think it is related to MG since ANY muscle can be any issue in the body. On high dose prednisone, I have had no trouble feeling my bladder or starting the flow of urine. When I went to lower doses, I immediately started having trouble again. Then they started me on IVIG and now my pred is very low and the bladder issue has not resurfaced. I have my thymectomy next Friday and of course need a catheter for surgery so I am worried but not totally sure whether it will reoccur.

Good luck with everything, debra
Debra! Thank you for sharing your personal experience! I so greatly appreciate that. I didn't know MG could also affect the bladder like that. The urologist said that there were only 2 causes for the lost of sensation I have 1)Cancer and 2)MS. It isn't cancer and so he later said my problem is with the brain-meaning???what exactly. That's why I am being sent to University hospital to an MG neuro specialist and MS neuro specialist. Sure hope someone can figure it all out this time. I'm ready to start serious meds. I've gone without as long as I could. Interesting to know how the prednisone helped your bladder refunction. I know the bladder is fine but brain/nerves etc aren't sending messages correctly. Haven't been able to pee again last 3 days-only a shot glass or less! LOL. See nephritis on Monday-they want him to do a kidney biopsy to see if they can get a name to this beast that way. Kidneys have constant +3 or +4 hemmorraghing so puncturing the kidney is serious but its time...doc n I have put it off for over 8 years-other docs want to KNOW the name of the beast! Hahaha. Wish me luck. Next few weeks will be challenging.
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