www.incontinentsupport.org

Is anybody here familiar with CNS problems, or know where to go to find out more? I have quite a few questions.

I have neurogenic bowel/neurogenic bladder. I assume that CNS refers to the central nervous system, so the folks here who have neurogenic control issues would be the natural respondents for you. I have had numerous neurological exams, mostly for research purposes. Granted that, from a patient's perspective, there are worse exams, these are bad enough. I especially disliked the electromyogram and the spinal tap.

I'm having a lot of symptoms that are related to MS and my doctors think they've seen a non threatening vascular malformation in my brain. Today I'm experiencing a type of incontinence I've never experienced before.

Now, for the most part I'm continent, except maybe once every week or two it'll come along and stick with me for a few days. Usually during these events, I don't realize my bladder is full until it starts really hurting. These past few days, it's more of an overflow I guess? I'm not sure. A few days ago some just kind of leaked out with 0 warning and I went to the bathroom and peed a LOT. Now, this morning it's been more like a very slow leak, like somebody just barely left the faucet going. I've gone to the bathroom a couple times today (no big accidents), but shortly after I go it's like my bladder is vibrating. For about 30 minutes after that, I'll slowly leak like a faucet with an occasional real heavy urge for a split second and I'll release some. It's really strange to me because I've never experienced it.

My legs acting crazy doesn't give me any assurance. Today they've been the worst since March, but again, in a different way. I'm calling my doctor tomorrow. It's just scary and I feel crippled.

For what it's worth, I have been 'enjoying' MS for over 30 years but since symptoms vary so much I don't know if I can be of any help here. Do as, though, Alainaluvsu, if you think I can help.

Alaina,

That whold "vibrating bladder" you wrote about made me go "YES! That's exactly it!" I never figured out how to describe it before. It's just this tingling vibrating sensation that makes me feel like I have to go again but darn it I just went! I can't begin to explain how frustrating that is. Good luck with the Dr. I'll be telling my new Primary this Saturday about my issues and see what happens from there. But thank you for the help describing the sensation.

_________________
"Why is the rum always gone?" - Captain Jack Sparrow

"There is no human problem which could not be solved if people would simply do as I advise." -
Gore Vidal

You're welcome Ms. Shendo (Hope I got that right)!! Good luck with everything. Please keep us up to date!

I go in tomorrow. I need help walking today. Hopefully I'll be okay tomorrow. This is awful, I've slept sooo much the past 24 hours. Fatigue and disoriented today. I would've replied earlier but I just wasn't up to it.

MS or a vascular issue, this is scary. Doctors don't really seem to want to deal with you when your problems aren't easily visible. At least I finally got an MRI with something showing on it. I was doing well for months until yesterday. I knew it was coming, on Sunday I had a lot of vision abnormalities. If it's MS it's my second major "relapse", and I think I've had permanent damage since my first. I'm too young for a wheelchair

Alaina,

I am sorry to hear about the relapse and I hope for your sake you don't end up in a wheel chair. Too young or not. Wheel chairs are great for letting you be mobile but there are still some areas that are not as ADA compliant as one would like.

I remember one of my friends in our church group was wheel chair bound and when we had something on the second floor a groub of guys would surround him and just carry him up wheel chair and all. And his was electric!

I am sure you will keep us all updated on your appointments as I will going forward.

And the MSShendo stands for Murddok Shamantis Shendo. It is a pen name I had used when I was younger and is now my e-mail address.

_________________
"Why is the rum always gone?" - Captain Jack Sparrow

"There is no human problem which could not be solved if people would simply do as I advise." -
Gore Vidal

Okay Msshendo! Well I apologize for assuming you're female. That is quite an inspirational story!

I'm out of the hospital. I have been diagnosed with "Clinically Isolated Syndrome". Basically I have MS but they have only found 1 lesion. I'm still not walking, but I am getting stronger every day. My neurologist is a resident but she seems very intelligent and I believe I'm in wonderful hands.

Sorry to hear of your diagnosis. However prognosis is very variable and many people recover and never get any worse. I can identify with the tremendous fatigue, though. That's very much part of relaspes for me too.

If I can help with questions etc. do ask, I'd be only to happy to help.

Alaina, it is no problem. We all use usernames here I guess in part to hid our true identity. There still is a big part of us that do not want others knowing about the problems we deal with. But here, we can be free to express ourselves. I guess a bit of confusion is par for the course.

_________________
"Why is the rum always gone?" - Captain Jack Sparrow

"There is no human problem which could not be solved if people would simply do as I advise." -
Gore Vidal