Acute Disseminated Encephalomyelitis (ADEM) Support Group

Urine incontinence


#1

hi i am 27 years old and i was diagnosed with ADEM by November 2015 .

i undergone all the treatment like steroid, plasma, ivig and i came out of it within 20 days of time and post that my lower limbs got paralysed and have done physio and now my lower limbs are fine but have little numbness .

Now almost everything got cured , but i am left out with big problem that is urine incontinence. Please help me out on this pls


#2

I had ADEM 8 years ago and for the part 3 have been incontinent. Is it ADEM or age? Who knows!!


#3

Hi Raj, I was diagnosed with ADEM in February 2015 and still experience urinary incontinence. When I previously brought this up to my neurologist, she wanted to order a urine test which I didn’t end up following through with due to unforeseen circumstances. I notice my dietary intake and limit caffeine consumption which seems to be a HUGE factor in me wanting to use the restroom to urinate more often than I expect unlike before my illness. Have you brought this up to your doctor(s)?


#4

BTW, how did you get ADEM? Do you know?


#5

Hi Raj,

I have fought off ADEM strictly with diet. Mostly because Dr.'s could not make up their minds of what I had by symptoms. I have noticed a big difference from eating Dates, Asparagus, Artichokes & Leafy Greens, etc. A lot of fruit also. I quit drinking coffee and switched to Lemon Balm Tea. This tea and others have felt more healing. I’m almost 100% back to me except a little muscle and nerve weakness in one leg. I hope this helps. Diet was my only option after waiting so many years on a diagnosis.


#6

Hey gang,

You need to specifically ask your neurologist or primary doctor for PELVIC FLOOR SUPPORT THERAPY. It works for either incontinence or the inability to go (which is what I had.) It’s a bit embarrassing to talk about, but it made a world of difference for me after only a few visits to the physical therapist that specialized in it.

Good luck!

Laura


#7

Mine was viral caused.


#8

Mine was caused indirectly from my flu vaccine.


#9

I have heard that also. How are you doing now?


#10

My 32 yr old daughter who went down with ADEM end of 2015 is now self catheterizing while under a special Bladder Nurse here in Hertfordshire. She kept getting urine infections and unable to hold urine for too long but now she says it helps her sleep better at night and because she is now able to empty her bladder more fully she hasn’t (touch wood) had infection for a few months now. Its down to nerve damage in the bladder region. She is also left partially sighted as it all started from optic neuritis but is able to do this daily with magnifying mirror. I was surprised how strong she is and so able to do this because I don’t think many could.


#11

Flicking through the site again today and I need to mention that daughter’s urology consultant at the Lister Hospital, Stevenage, UK, has suggested she try using D-Mannose to help with urine infections. Daughter was taking cranberry tablets which seemed to help. With D-Mannose I notice there are lots to choose from on the website and health shops but we chose the Waterfall (?) variety which she felt helped a bit but has in fact come down with infection again but the first for several months. D-Mannose is recommended either for infection or maintenance by taking before bedtime. Doctor suggested this to help stop taking frequent anti-biotics.