[TRESA]

Sorry I have been absent for so long-here goes the story: I live in a small town in Kansas and was being seen by a neuro who is highly intelligent and very much thinks he is the top dog in this medical arena. When my new internist last year arrived from Texas/SW Medical school-she believed I had MS and got a therapy team to assess all my body weaknesses. Then she sent me to our Kansas City Medical center to a highly regarded MS specialist. My neuro found out and on my next appt with the MS specialist I was told in no uncertain terms to return home and not return without my doctor's orders!!! Dumbfounded I walked out of her office. All I could think was-my internist DID send me??? I was so bewildered. Well, next day I found out my new internist had been fired! I can only assume the "Top Dog" disapproved of her going behind his back or whatever. Small minded "Dr. god" dwelling in a tight *** box! Well, over the year, I developed ptsosis, dbl vertical blurred vision, attacks of eye blindness, gasping breath attacks etc etc. So recently I was sent to Urologist cuz during last flare-up I stopped urinating for 3 days so I get to have the exam. ome to find out I have totally lost all sensation of feeling down there and only bladder empty 1/2. So, neuro who had finally started me on Mestinon-which has been a life saving drug for me and I have a life again-has now been shot down by ??? and called me into his office to tell me he is done with me and is sending me on to Myasthenia specialist at Unoversity-which Im very excited about as his bio is incredible. So now I have to stop all meds-and it is scaring me to death! Heart, lungs, kidneys, seizures etc. "They" want to see me me at baseline! UGH. The trip is 31/2 hrs away-appt at 9AM and another at 3PM and then around 5PM I get to return home with another 3 1/2 hr drive. I WILL NOT SURVIVE!! haha. This better be worth it-that;s all I got to say about all this craziness.

[suev]

Sounds like you have had some difficult times! Not enough to be sick...but to have to deal with all the conflicted egos in small town medical community can be awfully draining and wastesful for you ...the patient!

Hope you can find someone to be with you when you have all your tests. Someone who could drive to/from and just be there for support would be a huge help for you.

Pls, keep us updated on how you make out. Hoping for the best,
Sue

[TRESA]

Thanks Suev-I see ur from Texas too. No, I am way sick-on disability for 3 years with PAs daily...but getting sooo much better on Mestinon. Problem is that now that I have lost my bladder function the docs are upset this neuro had stopped the MS specialist from examining me for MS two years ago. I obviosly have MG but looks like I also have MS and Kidney specialists are fairly certain I also have Lupus involvement so am getting a kidney biopsy next week for the lupus. It just goes on n on. I did some lookin online yesterday and decided I will go 3 days before trip to Univ docs and get rested-sight see(play around) and just make the trip a mini vacation. I do NOT have to torture myself, now do I !!! My case worker can show up on the appt day but I will be stress free and rested! Positive Action!!! So that's my decision for today. Thanks for ur ideas too. I will see if I can get a friend or 2 to go too.

[art chick]

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

[TRESA]

Originally Posted by art chick

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.