www.incontinentsupport.org

Support for dealing with incontinence
It is currently Thu Mar 28, 2024 7:27 pm

All times are UTC - 5 hours [ DST ]




Post new topic Reply to topic  [ 10 posts ] 
Author Message
PostPosted: Fri Feb 19, 2021 8:09 pm 
Offline

Joined: Sun Jan 31, 2021 11:14 am
Posts: 212
Hi,
Just wondering about that question. It is one of the next things my doctor wants to rule out. I was wondering if anyone here has had a later in life "hidden" form of Spina Bifida diagnosis (as in not at birth), and how it manifested with their IC symptoms. (If you don't mind sharing.)

All my best,
C.G.

_________________
Thank you kindly,
CG


Top
 Profile  
 
PostPosted: Sun Feb 21, 2021 3:58 pm 
Offline

Joined: Mon Mar 24, 2008 1:03 pm
Posts: 167
Some years back I knew a woman who was diagnosed with spina bifida occulta at about age 40. Bladder incontinence was the first clue that lead her to find medical treatment.

J.


Top
 Profile  
 
PostPosted: Sun Feb 21, 2021 6:54 pm 
Offline

Joined: Sun Jan 31, 2021 11:14 am
Posts: 212
Yeah...hmm. I've been reading some. There's just not much in the way of folks talking about how it's progressed for them. My doctor called an emergency MRI for me after my Urodynamic testing a week ago. He mentioned over the phone that it would be something he would be looking for. That's all happening this week. I just can't make myself relax and wait for the doctor to do his thing, I need to know EVERYTHING, like now. (Just the way I'm wired i suppose)

Well, I'll find out more soon i guess. Getting myself worked up about it isn't helping, I suppose.

_________________
Thank you kindly,
CG


Top
 Profile  
 
PostPosted: Mon Feb 22, 2021 11:46 am 
Offline

Joined: Sat Mar 29, 2014 11:45 am
Posts: 1836
Although I do not have spina bifida occulta, I do have Marfan syndrome, which, for incontinents, is similar. Spinal surgery is not indicated for me, although it is indicated for some spina bifida patients. Good luck getting this sorted out, and report back when you can.


Top
 Profile  
 
PostPosted: Mon Feb 22, 2021 7:39 pm 
Offline

Joined: Sun Jan 31, 2021 11:14 am
Posts: 212
Thanks Patrick,
I appreciate that bit of encouragement. Getting closer to answers.

I read about Marfan syndrome out of curiosity. You sir, are a very rare individual! Rare indeed.

Cheers,
C.G.

_________________
Thank you kindly,
CG


Top
 Profile  
 
PostPosted: Thu Feb 25, 2021 11:31 am 
Offline

Joined: Sat Mar 29, 2014 11:45 am
Posts: 1836
CG,

Thank you for your support. Marfan is a complex situation involving multiple genes, with a wide range of symptoms. In its worst form, Marfan patients can have their first surgeries in infancy, hospitalizations lasting several weeks every year during childhood, and succumb in late childhood or early adolescence. Although Marfan is the root cause of my incontinence, I have a very mild case; as long as I take my medicine religiously and keep it under surveillance, I should live a normal life span. Again, thank you for your support.


Top
 Profile  
 
PostPosted: Thu Feb 25, 2021 11:38 am 
Offline

Joined: Sun Jan 31, 2021 11:14 am
Posts: 212
I would add that your rarity is mostly due to your wisdom, and the support you offer to others, while dealing with your own highly complex health issues.

Very glad to have met you, sir.

_________________
Thank you kindly,
CG


Top
 Profile  
 
PostPosted: Thu Feb 25, 2021 10:08 pm 
Offline

Joined: Sun Feb 07, 2021 2:40 pm
Posts: 64
Location: Newmarket Ontario
I would second that CityGardener , just from reading older posts, a voice of calm , wisdom and reason is most appreciated , thank you Patrick. I will be going for cystoscopy next Friday , so your calm comments in previous posts was very reassuring. Thank you again for your many contributions and empathy to so many of us.


Top
 Profile  
 
PostPosted: Fri Feb 26, 2021 10:28 am 
Offline

Joined: Sun Jan 31, 2021 11:14 am
Posts: 212
Good luck with your tests Paul.

Hope you get some answers and a plan of attack for your battle.

CG

_________________
Thank you kindly,
CG


Top
 Profile  
 
PostPosted: Fri Feb 26, 2021 12:30 pm 
Offline

Joined: Sat Mar 29, 2014 11:45 am
Posts: 1836
Thank you, I guess. I deserved none of your kudos, but I'll take them, even if it means none of my hats will fit any more.


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 10 posts ] 

All times are UTC - 5 hours [ DST ]


Who is online

Users browsing this forum: No registered users and 10 guests


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
cron
Powered by phpBB® Forum Software © phpBB Group