Generic Symptoms (Bowel and Bladder Problems)

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Generic Symptoms (Bowel and Bladder Problems)

Postby eebogan » Wed Oct 17, 2012 3:48 pm

So, I have had some urinary and bowel problems (sorry if I am too blunt), but does anyone know why syringomyelia causes these problems? I went to a urologist and he honestly said, "I can't help you. You are free to come back when you figure out your neurological symptoms more." I cried all the way home because I have so many questions that no one will answer.
Idiopathic Syringomyelia. Fibromyalgia.
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Re: Generic Symptoms (Bowel and Bladder Problems)

Postby razzle » Wed Oct 17, 2012 4:18 pm

yes it does read this page and tell him to read it also

http://www.asap.org/index.php/disorders/syringomyelia/
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Generic Symptoms (Bowel and Bladder Problems)

Postby reedy » Thu Oct 18, 2012 8:48 am

This is a well known symptom of SM. Lots of us have it to some degree or another.
On the urinary problems, basically the communication between the detruser muscle and the sphincter no longer functions properly (http://en.wikipedia.org/wiki/Detrusor_urinae_muscle ), so you get the bladder spasming and the sphincter relaxing or contracting when it shouldn't, so things can be all over the map (both leaking and retaining). Apparently you often CAN make the issues much better by 1) regularly (1-2x daily) self-catherterising and 2) taking drugs that limit the spasming. Apparently either one of these treatments on their own is much less effective than both together.
I'm at the beginning of dealing with this pro-actively, and under the care of a really good uro-neuro nurse and smart neurourologist, so I'll report back later. But it does take a while to see if it works. (Not helped by the 5-month wait I had to see the specialist, but I was impressed in the end when I got my appointment.) There is hope for improvement, or at least better management. The bad news is I have to take a lot of responsibility myself, and self-cathing is not for the faint-hearted. But then none of this is! Its all a lot of intensive project-management.

Start by asking for a referral to a neurourologist!
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Re: Generic Symptoms (Bowel and Bladder Problems)

Postby syrinx48 » Thu Oct 18, 2012 10:33 am

Hi,

I do have these problems too, the same as Reedy has written with the detrusor etc. I am under control of a neuro-urologist. I was stunned about his knowledge about SM. I also told him so. Mostly you have to tell a neurologist what is happening, but he told me how all worked. Also that the syrinx doesn't have to be per se in the same dermatome. I found myself lucky to have found him. When he changed hospitals I went with him.

Try to find a neuro-urologist, but I must warn you, they are hard to find!

Annemarie
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Re: Generic Symptoms (Bowel and Bladder Problems)

Postby emmacos » Mon Oct 22, 2012 1:27 pm

Hi,

My daughter Helen, who is just 21 yrs old and has cm/sm also has these problems. She takes medication to stop the feeling of constantly needing to urinate. But she also struggles constantly with constipation, and takes regular meds for this also, which dont always work.... at the moment they think she has leaks as she is getting very bad head pain which is worse some times than others, and i believe straining can cause/worsen leaks....

She is about to undergo a CT Mylogram to check for leaks. I still wonder if the pseudomeningocele she developed after her decompression surgery in 2004 is to blame for these agonising headaches - she is back in hospital at the moment as the head pain was so bad and she was also vomiting.... now waiting for the CT Mylogram....

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Re: Generic Symptoms (Bowel and Bladder Problems)

Postby eebogan » Wed Oct 24, 2012 8:10 am

Emma,
I am so sorry to hear that. I am very suddenly realizing that I am just at the start of this long haul. I could be like that by my 21st. I have noticed some leaking which is so strange because you have no idea. I just feel like I have no control over my life and I try so hard to get doctors to listen and they don't. I hope she hangs in there and they actually find the source of the problem! I wish you well!

Erin
Idiopathic Syringomyelia. Fibromyalgia.
"Life is what happens when you are busy making other plans." ~John Lennon
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Re: Generic Symptoms (Bowel and Bladder Problems)

Postby reedy » Sat Oct 27, 2012 6:58 am

I've heard that mice wizzle without control, leaving a little wizzle-trail wherever they go.
I have a code where I say 'I'm having a mouse day'. Mouse days happen if its too cold, too much stress, wearing the wrong shoes, walking too much, walking too little, inexplicable whims of the deities....

BTW - Rats have control and go pee in a set place (making them much better pets as a result). Sometimes when I'm in a crowd I look around and think the world would be very different if everyone had to deal with the same mouse-logistics we do (or...wee do! :-) They are lucky, all those rats.
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Re: Generic Symptoms (Bowel and Bladder Problems)

Postby tennesseewalker » Sun Nov 04, 2012 12:45 pm

Hi Erin. Specialists are sort of like the construction trade. They know ONLY their specialty. A roofer would have no idea how to fix the plumbing, etc. He was being honest telling you he couldn't help you. It's over his head (or out of his specialty).

Diseases of the spinal cord are the most difficult to treat (or even to understand).
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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