I have cerebellar Ataxia, when i notice changes in how my body works i can normally decide whether its a progression in the ataxia or if it is something else ( i may not be right but at least i can explain it.............. Does anyone know what i'm on about? Not sure i do LOL)
A few weeks ago i noticed that after having visited the loo to empty my bladder upon waking in the morning (like most people)
Within a few minutes of having finished i'd get an uncontrollable urge to do a No2/open my bowels.
When i get that urge to go..... I really need to go, At first i thought i'd picked up a bug and had diarrhoea because it was loose but it would then firm up during the day and not be a worry.
As i said its been going on for weeks now and I KNOW its not diarrhoea as such but its coming on almost every day now and is really bothering me as it comes on so suddenly (i've had many near accidents) during the day too but mainly the morning.
I am 46 yrs old and the thought of becoming incontinent horrifies me, Can anyone relate to similar symptoms in Ataxia?I cant talk to my GP about certain things because i know he's not very knowledgeable where ataxia is concerned, I have written to my consultant about it but i dont expect a speedy reply.
Thankyou for reading this and if anyone can shed any light/ideas on this i'd be very grateful.
Andy
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Andy-C
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hi hon, i am 43 and have ataxia (not sure which variant), i was having problems with my bladder for a while and then started having the same symptoms as you with my bowel. i have been seen by urology who gave me pills to help with my bladder but after having tests i was told that i also have an unstable bowel as well. the only suggestion i have is to try the tena slips. not very flattering but at least you can carry on as normal and go out and about knowing that if things happen you have an interim solution. see your gp though and see if they can suggest anything.
Try not to worry and hopefully your consultant will refer you for some help soon.
It is all connected down there and I have had to have some bladder training from a special physio. For girls it is slightly different, especially if we have had big babies, but the theory must be the same.
I have noticed that as ataxia progresses, all the senses and muscles are getting dulled. Although I am not cured (as it were) I have much more control and understanding of my pelvic floor. One of my main problems was not knowing, or rather thinking that I was tensing my muscles when I was not. It took several months for her to teach me. I have daily exercise routine which I need to do at LEAST 3 times a day to keep my muscles tensed when I need them.
It is more bladder urgency with me but like I said, it is all connected, I am sure, so hopefully you can get referred for help.If you go to one of the Ataxia Centres they are aware there can be a problem and referred me to see someone but there was a waiting list, so my neuro-physio recommended a lady who was closer. It tok several months though, but it has helped me no end to control things.
I know exactly what you mean about knowing (or not as the case may be) about whether a new symptom is a result of the progression of ataxia or whether it represents something else. It is incredibly frustrating and confusing at the same time. Horrible.
Whilst bowel difficulties can be related to cerebellar ataxia there are other things that could be causing a change in your bowel habit that are unrelated to ataxia. I appreciate it is difficult talking to your GP but my advice would be just that. Is there another GP in the Practice you could see? I think your problem warrants some investigation to ensure there isn't another, maybe treatable, cause. If the underlying cause does turn out to be related to ataxia you should at the very least be offered advice as to how best manage this distressing problem.
I noticed a drying up of bowel movements when I have gone on this gluten free diet.Like you I dont know when things are ataxia or not.Only we know the regular movements of our bodies.I have ca too and have noticed a difference in everything to do with movement.I dread going to the toilet because it means shifting backwards.I even have a thing round the toilet which the ot gave me.I didn't notice much difference except a steady progression but this year everything is going.I think my muscles are slowing down and I am only 53.
I dont get any pain yet but I have noticed a severe degeneration in walking and speaking
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same probs here mate, thinking you're tensing and you're not etc
have probs with bladder in a morning, can be every 5 mins but eases in afternoon, also bowels where I can be constipated easily so take Movicol but find I must go twice before I leave home in a morning, a mental state of affairs in my case, the old core muscles deserting us I guess
Can't try and 'hold it' any more otherwise it could end in trouble, either that is !
Touchy but necessary discussion...ah the joys of ataxia !
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