Has anyone been diagnosed with Spina Bifida later in life?

[CityGardener]

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.

[john1050]

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.

[CityGardener]

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.

[Patrick]

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.

[CityGardener]

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.

[Patrick]

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.

[CityGardener]

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.

[Paul Henry]

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.

[CityGardener]

Good luck with your tests Paul.

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

CG

[Patrick]

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.