Re: neurogenic bladder

[Guest guest]

In a message dated 12/18/01 10:40:07 PM Eastern Standard Time,

classicb@... writes:

> Does anyone out there have a neurogenic bladder or am I the only one in the

> world?

> I went to a urologist 2wks ago and had a test done and have another one

> this

> Thursday. Depending on the results he mentioned 3 choices: possible oral

> meds,

> self-catheterization or a " interstim device " . Actually the only one I

would

> consent to would be the oral med or possibly the " device " . The urologist

> stated

> that my CMT might have something to do with it. The nerves & muscles are

> not

> working and also having had 2 back surgeries could add to this situation.

> At

> any rate, if anyone has had any dealings with this I would appreciate any

> infor.

What are the symptoms, I have bladder problems, but never related to CMT.

[Guest guest]

Hi Barb,

It's Judy (Also in No California) I don't know what you mean by a

'neurogenic' bladder (I could break it down, but I'd rather know from

you more specifically) - and I KNOW a lot of med things - I'm a

garbage can of useless knowledge, that SOMETIMES comes in handy. (That's

what my friends call me - LOL Back to your bladder - my mom, my

brother and I have Dejerine-Sottas or CMT type III (or about 8 others

names) anyway, we vary in severity from my brother who is mild to mom -

moderate and me, right on course with the most severe. 3 years ago my

mom's bladder " dropped. " She was self-cath'd for a while, used this

strange " device " while they decided whether or not they could surgically

repair it, by actually going in and sugically putting it back in place.

They NEVER determined if it was actually related to DS, but BELIEVE that

it was, because DS can move from the extremities into 'other areas' -

which basically means the torso. Not definativly determining the cause

is like soooooo many DS/CMT related things, but she is doing fine now.

If you have any questions or need an ear, you can always email me @

stronggirl2@.... But AWAYS keep asking questions! Some things

that happen DON'T have anything to do with DS/CMT, but start there and

then investigate other causes. In your case, it may not be the CAUSE

that is what is IMPORTANT, but which TREATMENT. Were these the only

options?

Keep me/us posted, please.

obviously living nearby,

Peace & Love

Judy g.

classicb@... wrote:

> Does anyone out there have a neurogenic bladder or am I the only one

> in the world?

> I went to a urologist 2wks ago and had a test done and have another

> one this

> Thursday. Depending on the results he mentioned 3 choices: possible

> oral meds,

> self-catheterization or a " interstim device " . Actually the only one I

> would

> consent to would be the oral med or possibly the " device " . The

> urologist stated

> that my CMT might have something to do with it. The nerves & muscles

> are not

> working and also having had 2 back surgeries could add to this

> situation. At

> any rate, if anyone has had any dealings with this I would appreciate

> any infor.

>

> I did take the CMT Fact Sheet with me, so that he would be more

> educated and

> he thanked me very much.

> Thanks!

> Barb

> No.Calif.

>

>

[Guest guest]

Hi Barb,

Owen here,

About two years ago I noticed that I developed a numbing of the saddle area ( If

you

were sitting on a horse the part of your body contacting the saddle). After

seeing my

internist he referred me to a neurologist, a neurosurgeon, and a urologist. The

out

come was they all thought that the CMT was causing thickening of the nerve roots

supplying the saddle area. The neurosurgeon said if the problem became worse he

thought he could release the nerves from the bone. It is similar to people that

have

stenosis ( Bone closing in on the nerve.), but in my case the nerves are pushing

out (

Becoming larger). The urologist had the same choices you described ( Should the

problem becomes more of a problem. Loss of bladder control, infections, etc. ).

So

far there is little change that I have noticed.

I hope this was of some help. I know when I first noticed the problem I was

almost

frantic. In fact I think you are the only other CMT'ers that has even mentioned

the

problem. For a while I thought it may be only a guy problem. ( Over and above

the

obvious age and sex related problems.)

Happy Trails

Owen

classicb@... wrote:

> Does anyone out there have a neurogenic bladder or am I the only one in the

world?

> I went to a urologist 2wks ago and had a test done and have another one this

> Thursday. Depending on the results he mentioned 3 choices: possible oral

meds,

> self-catheterization or a " interstim device " . Actually the only one I would

> consent to would be the oral med or possibly the " device " . The urologist

stated

> that my CMT might have something to do with it. The nerves & muscles are not

> working and also having had 2 back surgeries could add to this situation. At

> any rate, if anyone has had any dealings with this I would appreciate any

infor.

>

> I did take the CMT Fact Sheet with me, so that he would be more educated and

> he thanked me very much.

> Thanks!

> Barb

> No.Calif.

>

>

>

[Guest guest]

Barb and Owen,

I also have the numbing of the saddle area and do feel that I have more of

urgency of relieving the bladder and the bowels. When I have to go, I had

better find the bathroom......as I have a problem with the muscles that

contract to hold back. Do feel that these muscles just do not work well. I

am 76 years old and age does contribute to this problem too. I went to a

neurosurgeon and he sent me back to my neurologist. Had an MRI. My back is

fine. CMT can cause this to happen, he said. Just wait and see. If we loose

control on a regular basis, we can use pads for protection. When this does

not work anymore, colostomy can be performed. At one time I thought I would

rather die than have a colostomy.....now I am thankful they can do a

colostomy. I am a female.......Ann