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  #1  
Old 11-27-2004, 09:26 PM
Stasia Stasia is offline
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Default Diagnosed with sb at 23yrs old!!!!

Im a newbie at this site, as untill yesterday, I always knew there was something wrong with me but, did not think in a million years I was suffering from Spina Bifida!!! <br> The reason I am so shocked though is I am 23 yrs old and have only just found out!! I thought it was something that was discovered at birth not 23yrs later!! <br> Is it unusual for a person to live life ALWAYS knowing there was something wrong, and DOCTORS TOO, but only discovering its because of Spina Bifida at such a matured age of 23?? <br> I am confused because as I said before I thought it was something discovered shortly after birth if a person did suffer from it. I am still quite stunned and confused. <br> The only reason it even did get found is after years of fruitless psyho and so called "investigation," by my GP and local hospital, in to what has been causing me so much trouble, pain and disruption all these years, I found out my maternal aunt has been diagnosed as suffering from Ankylosing Spondylitis (another really quite serious spinal defect/disease)so was FINALLY sent for a spinal xray to see if maybe that is what I was suffering from too. It wasn't. It was found to be Spina Bifida!<br> My point being is that I to this would still not know if it wasn't for my Aunt's illness and my GP FINALLY agreeing that I ought to have a spinal xray!!<br> I don't honestly understand why 1)it wasn't picked up on when I was born, 2) why my gp didn't think to send me for a spinal xray many many years before now??? And as I said earlier I just want to know is it normal to get this diagnosis this late on in life??<br> Anybody able to offer me advice or just to talk to me about this to aid me get my head round this? Please?<br> Thank you.<br>
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  #2  
Old 12-17-2004, 09:35 PM
rose rose is offline
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Default Diagnosed with sb at 23yrs old!!!!

Hi

My name is Rose, i am a 26 yrs female with Spina bifida (since birth) and hydro.* If you want to talk about spina bifida or just someone to chat let me know.

<a target="_blank" href= "mailto:rosie_johnston1@hotmail.com">rosie_johnsto n1@hotmail.com</A>* I also have msn messenger and yahoo messenger

hope to hear from you soon

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  #3  
Old 09-12-2005, 06:07 PM
donnamarie
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Default Diagnosed with sb at 23yrs old!!!!

Rose, I am 48 and have spinal bifida.* I am a nurse and have just recently started to experience all the other symptoms of nerve damage having discovered a tethered cord.* Do you know about that sydrome?

*

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  #4  
Old 09-12-2005, 06:11 PM
donnamarie
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Default Diagnosed with sb at 23yrs old!!!!

Hi, its not unusual for people to get diagnoses later in life with spinal bifida because its not always noticed and many people have no symptoms until ...maybe giving birth and then they have a "flare up" which leads to investigations.

The family history you mentioned may have been aclue but unless you present with some nerve or neurological symptoms, its very possible to never be detected

*

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  #5  
Old 09-16-2005, 01:10 PM
aussiesb
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Default Diagnosed with sb at 23yrs old!!!!

Stasia,<br> Wow that is unreal I agree, I was diagnosed from birth due to a large open leasion. I am available to chat with you at anytime. I am on msn and yahoo chat under the name elvisfreak73 or drop me an email.
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  #6  
Old 09-16-2005, 01:14 PM
aussiesb
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Default Diagnosed with sb at 23yrs old!!!!

Donnamarie,<br> I have been diagnosed with TCS in the last 2 years, I was a fully able bodied Spina Bifida but now have to resort to a walking stick and wheelchair which I am having trouble adapting to. As I said above I am available for chat.
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  #7  
Old 09-17-2005, 02:41 PM
donnamarie
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Default Diagnosed with sb at 23yrs old!!!!

s a functioning person with SB occulta, all I ever thought of the risk of passing it on to my children.

I

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  #8  
Old 09-17-2005, 02:49 PM
donnamarie
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Default Diagnosed with sb at 23yrs old!!!!

I think my computer clitched and part of the message just disappeared.

I had my cord untethered before I lost control of my bowel and bladder.* That is a big consequence to the cord* being stuck.* I now have some disruptions that I think are related to scar tisssue and it can get re-tethered or stuck again.

I am currently using a walking stick too for balance when on uneven terrain and think about pads for urinary incontinence ...far too strange for me.

Maybe the hardest part is the medical profession, they just think its part of SB life, its not part of my life thanks.* Is that selfish or what?* I don't think any of us should be told to accept this stuff, when our pain and fucnction can be cared for.

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  #9  
Old 09-19-2005, 12:30 AM
aussiesb
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Default Diagnosed with sb at 23yrs old!!!!

Donnamarie,<br> that is so correct, they say to its ok just your SB playing up. I have been incontinent bladder and bowel all my life, my bowels have been totally uncontrolable for 11 years and finally Ive been told that its like that because of bowel that was taken to enlagre my blader three different times. Now Im looking at a colostomy. I havent even graduated out of nappies, have worn them since birth. My TCS has been there undeteced so long that now it is inoperable.
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  #10  
Old 08-26-2009, 01:33 PM
SaMuby
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Default Diagnosed with sb at 23yrs old

I was diagnosed by the GI specialist. Never saw it coming either, in regards to suspecting this. Had my own symptoms for months that started with possible IBS, to something else, then had a biopsy done with the intestine and came back with that.
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