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embarrassing issues with lack of sensation

Hi all

I’m a possible MS at present and seem to be in the middle of a new episode which started a week before the end of July with L foot parasthesia and L thumb and finger parasthesia. This progressed up my leg. I then one week later developed the hug with neruopathic pain on my L (at it’s wrost running from middle of my chest to middle of abdmoen and all way round back). I couldn’t sleep it was so painful to have anything touching me - even the bed or back of chair or clothes.

My bowel went awry (constipation and diarreah) and when I was wiping (blushes) felt like I couldn’t feel where I was wiping properly if that makes sense. I didn’t think to much of this at the time as was in so much pain with the hug. The hug thankfully has become intermittent (varying from a day to last a few seconds now) but I have also lately noticed I can’t feel much when my partner penetrates me. I thought maybe it was the position at first and tried moving etc but 3 weeks on it’s still the same - I can’t particularly feel much :frowning: What have other people’s experiences been with numbness down there?

To muddy the water I did develop flu on saturday and very high temperature on monday but I don’t think this is all pseudo-flare as everything started a week before end of July. I saw the GP on tuesday to talk about the spasm and my bowels as I wasn’t sure if they were related or not and really also wanted some neuropathic meds to help next time I have the hug as I did almost cart myself to A&E I was in so much pain and am worried as I’m flying next week for a work conference. He decided it was ?IBS and has sent me for bloods and stools check and told me to take things over the counter for a bowel spasm.

I have a neuro review end of September which I’ve had to fight for because my MS specialist went on sabbatical - I’ve had to wait 1 year to be seen for my 6 month review.

I guess I’m feeling slightly frustrated with it all.

Thanks

Reemz

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Hi Reems! Very sorry about all your problems I can’t help. I had MS for 15 years now. Still walk and do the usual things & thank God for that. Rahma. XXX

Hi Reemz,

I have had numbness to some degree since I was diagnosed 12 years ago. It is dreadful trying to go to the loo when you cannot feel anything but I will assure you that muscle memory works down there too and even when you can’t feel it - everything continues to work. I was also told I had probable IBS - the problem is that IBS is usually diagnosed when everything else is ruled out and you can never rule out MS. IBS can also be brought on by stress so it is entirely possible you have it too. As for the wiping (blushing with you) - its grin and bear it and after a while you get used to not knowing if you are clean - keep wet wipes in your bag for a final swipe as overwiping can cause irritation.

As for penetration, again its difficult to give advice. You could try ribbed condom but there is no guarantee you will get feeling back. But I would advise telling your partner and see if he is willing to try toys or different positions which might help. If all else fails speak to your MS nurse (if you get a final diagnosis) or GP - believe me, they have heard it all before.

I wish you all the luck and take care of yourself. Regardless of your final diagnosis, you will find your stride and adapt - if you need to.

Kelly

Thank you for your comments guys :slight_smile:

Kelly you made me smile talking about wet wipes I have those at home and ended up going out to get some over the weekend as was staying with family. They really make a difference. :slight_smile:

My partner is quite supportive even though I know at times he finds it difficult to understand what I’m experiencing and is always considerate and open enough to think of trying new and different things - so we’ll keep trying.

The GP isn’t neccessarily unsupportive but the feeling I very much so get is he’s very hands off with the neuro stuff. I really wanted some meds for the hug and neuropathic pain tuesday and in the end I walked away with a ? IBS diagnosis and some anti-bowel spasm meds to get over the counter. Not that I’m knocking tham as they may help with the bowel. Problem is he’s just lumping everything into one thing and he seems to get overwhelmed if I tell him about too many things (hence I didn’t even mention sexual issues / loss of sensation etc). This is the good GP in my practice!

I’m hoping when I finally get to see the MS specialist come end of september he might repeat MRI in light of new symptoms - particularly as my last spinal MRI was 2 years ago and most issues could oringinate from my spine maybe?

I shouldn’t complain - many people are much much worse. I guess it’s a combo of dealing with symptoms that mess up your normal everyday living and then to not be able to get the help you need because you don’t have an official diagnosis / or the GP doesn’t know and isn’t knowledgable enough / waiting for appointments which never materialise. It’s frustarting more as I work for the NHS so I feel at times rather let down by the system that I work for.

Anyway chin up and stay positive - I’m back at work and that’s a great thing as I love what I do and I’m getting married next year. Lots of good stuff :slight_smile:

Reemz

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Hi Reemz,

Had a silimar thing happened to me once or twice, Had no sensation when having sex a couple of times but that has never lasted but does sort of ruin the mood…this was before Dx so really freaked me out hasn’t happened for a long time now thankfully!

Also a week before I was Dx I was on holiday in Egypt and it was hot hot hot!! After I had been there a couple of days I lost all sensation of my private parts and also had the probelms of not knowing if was clean properly which was horrible so I know what you are going through, After Dx I mentioned this to my MS nurse and she said it was probably the increase in my body temperature that caused this to happen,and to be honest it hasn’t happened again to the same degree as Egypt.

Do make a point of mentioning it all to specialist when you eventually get to see them, But in my experience it did go away on it’s own, I know thats not the best advice you could hope for but I’ve been through it too and didn’t want you be alone in this.

Take care

Beckyx

Hi Becky

thank you for your comment. I’m hoping the loss of sensation down there is all just a blip like yours and anyday now it just all clicks back to normal. I did have something ? similar in the middle of my first episode after I went running - my butt went numb and bladder problems occured as well as reduced sensation down there. But it was all short lived aside from the bladder which didn’t recover till almost 8-9 months on.

Will definitely mention it to the MS specialist I’m seeing end of september. Just hope I get somewhere with the diagnosis side of things then.

My last review (end of sept last year) we decided to wait and watch as MRI showed non-specific lesions and neuro felt that as most symptoms were more sensory (though I did have bladder issues but all this was heaps better by the time I saw them) even though I’d had two episodes of symptoms I wouldn’;t qualify for DMD’s even if LP was positive. So I opted for no LP at that point as was feeling better and I wouldn’t get meds anyhow.

Lets see what he says.

Thanks for sharing your story Becky. I guess specially when your not sure of your diagnosis and it’s all new you kind of question yourself so it’s nice to have the reassurance that other people have been through the same too.

Reemz

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Hi hun, it`s good that we can ask each other questions about some very personal problems and then find out we arent the only ones suffering in this way.

About the difficulty in cleaning ourselves up after going to the loo…

Due to severe problems with constipation, I have to take and eat things which make me loose. It can take 30 to 45 mins sometimes, to do the paperwork. I end up with a sore and sometimes bruised hand and aching arm, plus twisting and pulling on my spc aint a good experience! I also get a sore botty from all the wiping…even if I use wipes or soap and water. I prefer not to ask hubby to help if at all possible, but there are times when I just have to.

So I have been assessed by an OT for a clos-o-mat loo. She says I definitely would benefit from one. Now I am awaiting the judgment of the Housing Adaptations bods to okay the work and means test me for it. That`s always a fun thing!

For anyone who doesnt know what these loos are, Ill explain.

They look much the same as an ordinary loo, but they need to be wired up, as after doing the necessary, the user uses one of many methods to operate a switch that sends a pipe out from the back of the pan, which flushes warm water to clean them up and then another pipe delivers warm air to dry the area. It`ll make so much difference to a part of my life, that many of you also find distressing.

If anyone is interested, why not ask for an assessment from an OT, eh?

pollx

Hi Reemz, Hopefully you’ll get the feeling back down there…I had a similar thing in November 2010, I used to go to the gym and I did a lot of leg exercises. About 2 days after my last session my left leg felt a bit strange, sore to touch even though there was nothing visisble. I thought I’d just overdone it a bit at the gym but then the whole of my left side went numb from my shoulder to my ankle, like you I couldn’t feel when I went to the toilet, but it was only my left side of " down there " which was very strange. I got some of those andrex wipes in order to make sure I was clean. This lasted about six weeks, it was only after week 5 that I went to the GP who told me off for not going sooner ( i hate going to doctors ). About the sex side of things, I’m afraid I didn’t let hubby come near me for those six weeks as it was just too bizarre knowing I only had 50% of feeling in my body. Like I’d been cut in half !!! In the end after my first MRI my neuro said it was a CIS as there were lesions in my brain and the positioning of them might indicate ms but because I had a clear VEP test and at that time ( July 2011 ) I’d not had any more symptoms they would discharge me. Diagnosis didn’t come until April 2012 as I’d then had too many more episodes to be CIS.

Hi there, just wanted to say that i’ve had similar problems with not much feeling down below, but i’ve found that the one thing that i can feel is (massive blush) a vibrator. Now, as you are fortunate enough to have a partner, i would suggest that you get your partner to try one of those vibrating rings you put on a mans, erm, thing. Gosh this is embarassing lol. Hope this helps, love Bex xxx

hi, also agree with the others, i have also had numbness down there, i lasted 3 months and it scared the hell out of me! I am lucky and like folksongs…i tried the erm vibraator and ring thingy and it did help. An understanding hubby was also very brilliant! The only thing as i found out was i have a lesion in my cervical spine and this caused all the problems to my left side. Now although i was only numb from neck to toes and everything inbetween…its very hard to enjoy sex when one side is missing!

But chin up…have fun experimenting with your other half…and giggle loads. It really does pass and get better. I also lived for 3 months with babywipes in my bag for the poo and other stuff moments. The worst thing was periods…i found i was leaking all over the place as i couldn’t feel when my tampon was full either. Bloody awfult hat was!

Hope it eases your worry a little as i am def back to full function down there and much happier for the learning curve…ahem HAHAHA. Need anymore help just ask anytime. Hugs xxx

Lea xx

You guys are so amazing with tthe advice. Thank you for sharing your personal stories. :slight_smile:

Reading your posts this morning really made me smile :slight_smile:

Poll the loo sounds like an interesting contraption. I had no idea there were things like this out there.

Fudgey I understand what you mean about not wanting your hubby to come near you as it feels strange. I feel v wooden going through the motions - waiting thinking I’m sure it’s got to get better. Poor partner is trying all kinds of positions but even ones that were hectic kind of feel like there’s not much going on. Worst is when he asks are you enjoying - I can’t particularly lie and say I am, but it’s not his fault he’s trying.

Folksong - your suggestion sounds good. We have used a vibrating ring before so maybe it might help. I’ll defo try it. :slight_smile:

Lea your story resonates with me as all my symptoms are L sided too. My 1st mri didn’t pick up any spinal lesions but I know they can be hard to see. I’m hoping the neuro offers another MRI this time as it’s 2 years since my last one.

Thank you again guys. You all improved with time so I have hope.

Reemz

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