Spina bifida occulta anyone?

[EOLHPC]

Following on from posting yesterday to sort of introduce myself a bit....I'm now hoping to make contact with anyone managing SBO.

This is because I'm being investigated by a bevy of clinics due to 4+ months during which my complex persistent chronic peritoneum/abdo/pelvic/spine conditions have been flaring (these conditions involve a typically complex immune dysfunction set of specialties...over the past 30+ years, i've lifestyle managed agogo & been thoroughly investigate by neurology + gastroenterology + urology + gyn + immunology + rheumatology and given reasonable diagnoses + various successful procedures & ops + rehab regimes inc core stability/pelvic floor + pharmaceutical treatments, all of which have combined to help me spend the past 2 years in the least abdo/pelvic discomfort & pain i've had since my 20s)

now I just hope to find out whether anyone here is like me in having been living with/managing a rather more complicated version of spina bifida occulta. this link goes some way towards explaining the various degrees of severity of SBO:

shinecharity.org.uk/spinabi...

my version of SBO was diagnosed via imaging tests many years ago. My consultants found my lower back was affected structurally & neurologically. This week, i'm intending to mention my SBO to the gyn/urology physio my consultants have referred me to...and am just wondering if the effects of all this may be something that gradually reshape to hit us in new ways with age: i'm now 62 and discovering the joys (not!) that age can bring to what had been effectively managed, relatively stable chronic conditions 😉

🍀 coco

[EOLHPC]

Just in case anyone wants to follow this question up on the Healthunlocked Lupus UK forum, I did post there as well. And there has been an interesting discussion with a young woman who has severe spina bifida + immune dysfunction + a type of hypermobility amongst other conditions

👍👏🍀

[AngelicGem in reply to EOLHPC]

Can you give me the link as I have Spina Bifida occulta and hypermobility xx

[EOLHPC in reply to AngelicGem]

Hello angelicagem

Here is the link to that HU Lupus Uk Forum thread, but it was done 3 years ago & the replier’s first reply seems to have been deleted, but there is a good internetlink to info re folic acid deficiency...apparently folic acid deficiency is linked to spina bifida) you probably know that you'll probably need to join the HU Lupus Uk community in order to be able to open this post):

healthunlocked.com/lupusuk/...

XOXO

[AngelicGem in reply to EOLHPC]

Thank you so much! 💖 xxx

[EOLHPC in reply to AngelicGem]

👍🍀❤️

[skybluepink in reply to EOLHPC]

Hi again .You may be interested in the SBO closed groups on Facebook where discussing hypermobility .I have also met those with it as well as CFS / Fibromyalgia too ! As for the Charities eg : Shine they discriminate & not supportive as ignoring because don't want to effect their funding .Many Charities including CAB & Age uk told me this ??!!!

[skybluepink]

Hi am considered by NHS to be low priority even though had to give up sex and thought of marriage because of severe continuous utis , IBS liquid diarrhoea ,neurogenic bladder double ureters , severe dysmenhorea even after the menopause , heart attack dying 3x from no assistance from the charities & system.

Still find former 3 weekly appts for acute uti rotating antibiotics not always treated urgently as hospital appts not transferred suspect a quick fix may have been done by MP now the Leader?!Aso possible sepsis to come and possible genetic multi infart dementia like Mother hoisted everywhere with mobility gone to point of speaking and swallowing and the cognitive.Sorry to sound so pessimistic I seem to to be blamed all the time just wanting fair assistance .

[EOLHPC in reply to skybluepink]

Am greatly feeling for you: this is an awful lot to cope with...I guess you've tried PALS....v dismaying: the system shouldn't do this to anyone. Courage 🍀🍀🍀🍀