hi, I have had a few bad days heavy arms and legs plus the usual numbness, tingling etc. I have made a appt. for Thursday with my neurologist but this afternoon my pelvic went numb with tingling sensations. This feels really odd and a totally new symptom for me, can anyone relate to this.
thanks,
ann
Hi Ann
Not sure if it is the same, but sometimes I have numbness in that area, whereby I canāt always feel anything when I spend a penny.
Some of the symptoms are so strange, hopefully the neuro will have answers for you.
Pam x
Hi Ann. Thatās a symptom I have and was too embarrassed to tell my doctor. Initially I had continence issues with it but now it comes and goes much like the numb/tingling/painful areas that seem to travel over all parts of my body. I donāt usually become incontinent with it now but I canāt feel when Iām weeing or finished so spend longer in the bathroom than usual but Iāve gotten so used to it now itās just another symptom to manage.
If you do feel you need to though you can speak to your nurse or gp and request a referral to the continence nurses. They are really good at managing any issues, discreet and very professional. Please donāt leave it as I did as Iāve stretched my bladder and could have been sorted out quickly and easily. Take care.
Cath x
Thanks Pam and Cath for your replies. Cath I am too embarrassed to mention it too my nuero, or maybe I am just embarrassed that he will refer me to the continence nurse. This has been my biggest fear that I will get bladder issues, I have not got the best bladder as it is. When I got my diagnosis I thought I can cope with anything except this. The idea of having at some stage to use a catheter makes me want to get into bed, pull the duvet over my head and stay there.
i know some of you use catheters and find them helpful and I do not want to offend anyone but for me I would find it to be the last straw. God I hate this disease just when you think it canāt get worse something else comes up and bites you.
sorry for the moan but my latest symptom is one I am not ready to share with my husband or best friend and needed to vent somewhere.
ann x
Ann I can understand your fears about catheters but please donāt ignore it. I was taught to self catheterise and needed to do it regularly for a few months and now I can go months without needing to do it and then just once or twice before it rights itself again. It really isnāt a big issue, youāre taught how to do it and it just slides in, you empty your bladder, remove it and youāre back to normal. It becomes no worse than using tampons, I promise.
I was so silly not saying anything, my bladder is now stretched to three times the size it should be and like a balloon when youāve damaged it like I have its not reversible. Please pm me if you want to but donāt leave it. The numbness may be like mine that comes and goes so infrequently now that I very rarely use my catheters but what a relief it is over sitting crying on the loo because I know I need to pee but canāt tell the muscles to let go and empty me.
It really isnāt so bad. I promise Iām not lying to you, the nurses are fab and you can get your life back. It really can be so simple to manage.
Cath x
I mentioned something to do with āanal sphincterā to a neurologist I saw many years ago, and he went bright red and rubbed his face with both hands. I was utterly shocked and felt he ought to go back to university to do a compulsory presentation on the basic anatomy of the human being, including things like stomachs, intestines, bowels and, yes, anuses.
The point I want to make is that it is very natural to be embarrassed by intimate subjects like bladder (or bowel) function. That is normal and understandable. But your doctor, neurologist, nurse etc. ought not to be embarrassed, if they are professional, and should help make you at ease talking about these things.
Lapwing that comment made me laugh. My 16 year old daughter mentioned problems she was having with menstruation to her paediatrician and I donāt think Iāve ever seen an African man turn bright red and die a small death like he did before. It was hilarious, my daughter was brought up believing it was a normal part of physical development but I definitely came to understand why he specialised away from adults. Poor chap!!
Never mind the āpoor chapā - he should be sent back to uni. to do the presentation as well!
Oh my gosh way to make me laugh before bed, I have the bladder nurse here tomorrow sheās lovely neurologist just wanted a scan but this is 3rd visit she seem worried what vesicare was doing to me, she mentioned catheters whoops canāt spell it, I said if I have to I will but as a last resort rather try LDN first but I am doing ok emptying now I stopped that vesicare.
Hi Ann, I am suffering numbness in all areas below my belly button to different degrees I have lost the urge to urinate as I knew it, my bowel movement notice is now very late, my buttocks are constantly numb, intimacy sensations are touch and go, (fitting description)!! As long as we all see these areas as not to be spoken out loud then embarrassment will never change. Why I will never know, Iāve had 3 pregnancies one of which were twins, the first birth was breach students in and out having a look and trying to turn the baby, Ive had so many hands in places I thought were only for my husband I gave up embarrassment as a waste of time. We all have the same and if I have a problem I expect the Dr in that or general health profession to respect my privacy but deal with it professionally. I think if I ever get a red face from a Dr I would shout OMG you sad sad person and leave with the complaint procedure in hand.
Pauline x
Hi Pauline, you are right in your attitude, I am trying to develop the same one. Everything you have said I agree with. It is just all happening so quickly I am finding it hard to accept that this is my life now. However I have young children and I will pick myself up and start fighting back.
thank you for your reply,
ann x
Hi Ann, I hope you didnāt take my reply to mean pick yourself up,Iām the last person in the world to preach this to anyone! I totally empathise with you. My children are all grown up now so Iāve had plenty of time to get where I am now with my" help yourself to any part of my body if it makes my health any better".
Pauline xx
Pauline, no I did not take your message up that way I understood what you were saying and appreciate your reply.
ann x
I had Gall Bladder key hole surgery last week and was horrified that I woke up with no bladder sensation at all. After not peeing for 12 hours they decided to catheterise me. That meant an extra night in hospital. They took it out the next morning, but still no luck. I asked if MS nurse could come and help me and she was brilliant. She sorted out the nurses, ensured I had a āflip flowā catheter and night bag so I could come home. Iām now waiting for District nurse to remove it and see what happens next. Very fearful that a life of catheters is ahead of me. I feel out of control, even more than usual, thanks MS. Even though Iām stuck at home anyway as I recover, no way would I contemplate going out with the catheter.
Onmyown I have had Catheter for ten years its not as bad as the thought of having one. I am Male and after several years of uretheral I am now SupraPubic. I am ok but I can remember how fearful I was when I first went down this route. I hope it sorts itself out and you regain control of the bladder.
Don