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Thread: looking for IC experiences from other MS patients

  1. #1

    Default looking for IC experiences from other MS patients

    They found out I have MS a while ago. I have an overactive bladder since many years, but the last months it feels like the urge frequency is increased. I only have experienced wet pants a few times, but it feels like it's getting worse. But how is this type of IC with MS evolving? Will the urges become more painful that one day you're no longer able to hold it? Or is it related to a schub where at a point in time you just can't feel/stop it anymore? Or is it too difficult to predict now?

    I recently got a cortisone treatment; the first 4 days after the last session were like heaven. No urges whatever, probably because the cortisone held all fluid. The 5th night was hell, I had to get up about every hour. Since then, the results vary; still urges during the day, but less awakenings during the night. Is this still the result of the treatment? Will the original urges come back when the cortisone influence disappears completely?

    To try to give myself some rest from physically have to go to the bathroom and to distress (I'm a DL afterall) I decided to try to wear diapers at night. This didn't go well, as it seems I can't get back to sleep after an urge. Who else is successfully using diapers for nocturnia, so not only for fun? Any tips to relax? I'm a bit afraid of medicines, especially their side effects. Will this eventually lead to bedwetting? I still wake up from the urges, so I think the answer will be negative.

    That said, I'm particularly seeking experiences from other MS patients who once were in my situation and can help me out. I have a follow up with my urologist and neurologist soon and want to know what I can ask them.
    Last edited by drynyte; 05-Sep-2012 at 21:42.

  2. #2


    IC is often a distressing part of MS, but it is one that the MSSociety in the UK (MS Info, Research, News and Support | Multiple Sclerosis Society UK) or the MS Association in the USA ( MSAA - The Multiple Sclerosis Association Of America) understand very well. Worth getting in contact and (in the UK at least) getting the excellent range of books and leaflets. You might find this link helpful: Bladder problems in MS | Multiple Sclerosis Society UK

    I don't have MS but know people who do, and am IC myself. With regard to the nighttime diapers I think you may have to recognize that there is all the difference in the world between wearing recreationally for pleasure and wearing for need. The only advice I can give is "give it some time" - you are in a new situation and if you persevere a better pattern of urge and relaxation may kick in.

    Good luck with it all.

  3. #3


    I had what the doctors called, clinically isolated syndrome back in May... I was told it's kind of like the first thing people go through before being diagnosed with MS? I did have a bed wetting problem while recovering, mostly anxiety enduced I think. But I do have a question for you, if you don't mind me asking... How far apart did you experience a "CIS" before you were diagnosed? It's been about 3 months since mine and I'm just wondering if I'm "in the clear" so-to-speak...

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