Hi i am not yet diagnosed but this week have had pins and needles in my left leg and numbness in the saddle area. I can’t feel myself wee which is really odd. I ended up at a&e to check it wasn’t my back but they have said i need another mri and to go back to my neuro. Has anyone else had these symptoms? Is it really likely to be ms? (my other symptoms are numb face and shaky arm but these have been good for the last 6 months). The doctor was really sweet she said she knew i wanted her to tell me it was my back but still i was rather upset at her diagnosis.
Hi Anon,
I’m afraid it’s impossible to tell, just from a description of symptoms. Yes, some of those things do occur with MS - but might be caused by other things as well. That’s why you’re being referred for further tests. MS is difficult to diagnose, even for an experienced neuro. They need to be sure there’s not another explanation for your symptoms - which there still could be, at this stage. MS has many mimics - some of which are quite easily fixed.
So as hard as it is, try to stay open-minded. Having similar symptoms does not prove it is MS.
Have you been told it’s likely to be? I’m a bit confused, as you say you haven’t been diagnosed, but also that you were upset by the diagnosis. So what diagnosis (if any) have you received 'til now? Or has she said only that it isn’t a slipped disc?
Tina
Hey there! I too get numb in the pelvic region but I’ve never told neuro, doctor or anyone. I’ve never mentioned it here either…so I feel a bit relieved that I’m not the only one who gets that! Maybe I’ll book in to see my doctor and explain it to him now I know I’m not alone in this one lol. I too am not dx either. Been having ms symptoms for 4 years! Spent the last 2.5 years suffering in silence as I cantu be bothered with neuros and docs they just idiots who don’t listen so I just crack on with whatever label they stuck on me at my last consultant visit lol. Anyhow hope u feel better soon xxxxx
Jojo,
Please do mention, as it’s certainly relevant. Whether it’s MS, or something else, it could point to where the site of the damage or problem is.
There’s nothing they won’t have heard. I had to explain to a quite elderly, rather distinguished, Hindu (I think!) man I’d never met before, that I couldn’t feel my vagina.
Just had to take a deep breath and say it! If they don’t have all the facts about what’s going on with you, how can they reach proper conclusions?
Tina
With my notable epsiode of symptoms last oct I had numb L leg and pins and needles in it as well as my L arm and pins and needles on the L of my face. I was trying to keep fit still at the time and went for a run. I came back and my bum was numb as well as my lady bits and it was shortly after that the bladder issues developed further and some bowel issues. I obviously over did it when I was in the middle of an episode and though the numb bits cleared up eventually months later my bladder has continued to play up.
At the time my bum use to hurt sitting on it and by the end of the day I had to slouch ( I work in a hospital some of the time with children which was quiet difficult)). I can laugh about in now but at the time it was frustrating.
I was embarrased initially telling my neuro too but I think you have to if you have any hope of getting the help you need. As for this forum - you can see just how many of us have had a similar symptom at some point in time so please don’t feel shy or afraid.
We’re all happy to support and discuss 
Hope you feel better soon.
Reemz
X
Thank you glad to know im not alone. Well will have to go through the explanations all over again im guessing with my neuro. The diagnosis was more about the fact she told me it wasn’t my back and that it was probably time for a lumber puncture and another mri which i think was their way of telling me they agree with the neuros theory of ms.
Thank you glad to know im not alone. Well will have to go through the explanations all over again im guessing with my neuro. The diagnosis was more about the fact she told me it wasn’t my back and that it was probably time for a lumber puncture and another mri which i think was their way of telling me they agree with the neuros theory of ms.
I’m so glad, this has been posted. I’ve not yet been dx but have an MRI booked for 10 Nov. Apart from all the pins and needles, losing use of left side and icy trickles (nothing visible there) going down legs, One of my main worries has been below the waist.
I had a patch at the base of my spine which produced vasts amount of sweat, just there no where else, although this has now stopped. Also around the same time I had no sensation at all whilst having sex, apart from the need to deficate, (this is really embarrising, sorry) Can’t feel vagina or other areas. Also when period is due, all problems get worse, I think this is down to temperature rises (hate the heat now, used to love it). My periods have changed, since symtoms started, much heavier and second day in, it stops completely for about 24 hrs. When I mean stops, it stops - nothing but then after about 24 hrs, it comes back with a vengence. It has only been like this since the start of symptoms about 2 yrs ago, and at 42 yrs, I should be glad when they stop altogether. I did mention to neuro about lack of feeling and no sex drive/feeling but not the periods - I got the impression, he’d heard enough. I have urgency incontinence and bowel problems, as well.
My other main worry was my awful memory and confusion, I tried to open the front door with my debit card and couldn’t work out why it would not open the door. I’ve also given my name as Mrs (maiden name) instead of my married name. I’m so grateful to the posters on this subject. Thank you.
Anon, I couldn’t believe it when I read your post above. I too have had the same dodgy periods which stop in the middle for a whole day then all f a sudden cones back! How weird Like you the numbness in my vagina and pelvis gets much worse during my period! Never thought about it before jut thought my periods hd goe a bit mad didn’t think it could be linked to ms. Also get chronic pains in the pelvis during my period and my periods are way heavier than they ever were. Thank you so much annon for writing the reply above mine.
Hi Jojosimmo123, thanks. It’s not something you discuss outside your partner is it, but my husband of 16 yrs is a star. He knows I can’t feel a thing but never shows it bothers him. It appears to be a semi-perminent thing with me - the numbness below, not just on a period. The periods are strange, I thought I was going mad but I can now time it almost to a couple of hours to when they will stop and re-start. The sweating at the base of my spine hasn’t come back but it was bad enough to drench the bed, bit strange how it was just one area of my lower back and not at other sweat points, I wasn’t even hot. So good to finally get this off my chest and know i’m not going mad.
Tried to post last message anon but it’s listed my name anyway, not to worried, just now grateful I did post.
I’m glad you’ve posted too joannap. Honestly I thought i was going mad. I’ve got private neuro booked for end of October so I’m going to mention this numbness and altered periods and see what he says. (slightly embarrassing that he’s a bloke lol). I’ll let ya know what he says. Xxxx
I’m nor dx either but wanted to chip in about the periods thing. I’m 42 and for about the last six months have experienced similar issues. They’re much heavier than they used to be and very erratic. They will very often start for a day or two then stop and start again a day later. I just assumed it was my age and I was showing the very first signs of menopause.
I have only been diagnosed since May so I do not have a lot of experience with MS but have experienced a few of these symptoms, especially pins and needles down 1 side, mine was the right, and a loss of sensation in the pelvic area including bladder control (not pleasant :-() Although in recent weeks I have regained pretty much all the feeling and my bladder is near enough back to normal. I have also regined sensation whilst having sex much to my relief!
C xx
I have only been diagnosed since May so I do not have a lot of experience with MS but have experienced a few of these symptoms, especially pins and needles down 1 side, mine was the right, and a loss of sensation in the pelvic area including bladder control (not pleasant :-() Although in recent weeks I have regained pretty much all the feeling and my bladder is near enough back to normal. I have also regined sensation whilst having sex much to my relief!
C xx
Hi, and like many others thank you for posting this thread. I too am undiagnosed but Neuro says it is highly likely to be a diagnosis of MS and has referred me to a MS specialist.
During what I believe to be my first relapse in Feb, I too had numbness of my lady parts and kept on complaining to my very understanding partner that I felt numb from waist below to my thighs. I did then think it was a trapped nerve so put it down to that but after about 1 week the numbness from those parts left but I still to this day do not have full feeling in my fingers.
I have had 3 app’ts with the Neuro but have never been brave enough to tell them of that particular symptom.
It is nice to know that I am not alone.
I have recently been diagnosed with fibromyalgia, though my symptoms are looking more towards MS. I have awful strong tingling sensation from my head which goes straight to my vagina. I am lightly inncontenant and feeling light crushing around my ribs, besides headaches, visual problems, horrific turns, numbness all over but mainly the left side, terrible memory loss, cognigtive difficulties, walking, focusing, pain and gripping. Not seen a neurologist. Would anyone recommend that I do?
Ladies I couldn’t resist joining this thread re the lady bits none of us want to have to mention!!
When I became unable to wee in July, I also developed a mixture of both numbness AND over sensitivity in the vaginal area.
Imagine, being in A&E, being catheterised and having to explain to a not very fluent in English very earnest looking registrar, that the sensation you feel is like one of constantly being on the edge of an orgasm…
Which sounds fun but isnt!!
Fast forward 3 days to hospital admission when leg packed in, to have to explain it all again to a Neuro and a bunch of med students, most of whom were young men not much older than my son!!
I thought childbirth was embarrassing, but having to explain varying sensation in one’s nether regions in such terms kind of beats all!
Have to do it all again in 2 weeks at neuro appt, plus add in that I vibrate internally after having a wee 
Oh and sometimes I can’t feel having a number 2 …
The joys - Nice to know not alone in this though,
Minnie xx
Hi,
You need to ask your GP that question rather than us. There are a huge number of crossover symptoms between fibromyalgia and MS, but the person to ask if definitely your GP, who knows you and what symptoms you have.
Best of luck.
Sue
Thank you. I will.
I’m glad you posted this thread, I’ve had what i call “saddle anaesthesia” since may, lot of symptoms you all mention., numb bum, lady bits etc., had bowel and bladder issues but self referred to continence nurse at hosp., one best things I’ve done this year, lol, i must get out more! She helped so much and now i can self catheterise if have retention, saving trips to a and e and drs, i had to explain to an impatient curt dr that i couldn’t feel opening my bowels, he did take it seriously in the end when i repeated myself a few times!! and I ended up being admitted for a week and given steroids which stopped further damage. Don’t suffer in silence, there is help there but need patience with it. I’m still in limbo, awaiting diagnosis, but don’t feel so alone now after reading these posts. Jules