Last reply 10 months ago
Altered sensation downstairs!!

Morning all, hope everyone is feeling OK. It’s been a long time since I’ve been on here so bare with me. I’m struggling today. I’ve had altered sensation for a while now but since last weekend it has spread to both legs and feet and all around my private regions. I have the sensation of needing the loo but feels totally weird when wiping or washing. I’m scared it’s going to get worse, also when I try walking it looks as though I’ve pooped! So sorry everyone but it’s the only way I can discribe it. I spoke to my Ms nurse yesterday morning as she canceled on me for my jcv blood test, she told me to see how I go and if no better by Monday ring them! I’ve had this sensation before but not to this extent. Had a relapse back in August, was put on steriods which helped with balance but nothing else.
Ok lovely peeps moan over, and relax lol 🙂
Hope everyone has a good day

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10 months ago

Hey Gemma! I’ve had this exact same thing! Thought I was the only one. Unfortunately I don’t have any advice, but mine went away after a couple months. At the time I had no idea that I even had MS so I never even spoke to my nurse since I didn’t have one yet. I know it can be very painful. I’m so sorry you’re going through this. I hope you feel better! Best of luck!

10 months ago

Many thanks @mlgilber1 for ur kind words. It’s so nice to be able to connect with people on here, makes you feel more normal whatever normal is 😁. Have a great day

10 months ago

I’m a guy ,but I’ve had exactly the same sensations for months now, it was a bit worrying at first, especially as we have more external “tackle’ to deal with , lol.
some areas seem to become hyper sensitive, while others quite the reverse.
I guess it’s just down to the fake messages that the areas are receiving from the damaged nerve sheaths.

10 months ago

@gemma81 , it may not be progression as such, it may just be your body letting you know that you have MS and you’re presently doing something that it doesn’t like. If you’re over-tired for example.

But, stay in touch with your MS Nurse, if it doesn’t improve.

10 months ago

@gemma81 I’ve had the opposite problem, bit ambarrasing at 60 to have excess libido and sensations more expected in a loving cuddle. When you’re on your own and used to ‘sleeping’ alone it’s no joke. But like @mlgilber1, it only went on for a few weeks, it has happened a couple of times in 26 years, but all is not lost so don’t worry.😍

10 months ago

Hi @gemma81, the only other thing to suggest is that you might need to rule our a bladder infection; any time anything toilet-related, like rushing to the loo comes up it’s worth a check. Hopefully you will feel better by Monday, but ring the MS nurse anyway so she can log how you are. Have a good weekend x

10 months ago

@ vixen, @ stumbler, @ sigma delta and @grandma, just wanted to say thank you to all of ur replies. Always makes you feel a little better when someone else knows what ur going on about. Bladder infection has already been ruled out, checked that first as I knew my Ms nurse would ask that! I’ve learnt to laugh at all the different things I do and how I do them when Ms is playing its part, it seems to make it easier on my kids to see. Will check in with ms nurse on Monday if no better. Have a fab weekend all 🙂

10 months ago

I’ve recently experienced altered sensations down below. Like a tingling in the groin region. It went after a wee while but was very strange.
You aren’t alone with this one xx

10 months ago

I have had a lot of alter sensations. Legs and groin area. It so annoying.
Yoga and and shake my legs.
I relate to the numbness in groin area.
No pain just annoying.
Mine comes and goes some days drives me crazy.
Good luck keeping going it will pass.
LJl. 🙅‍♀️

10 months ago

Hi @gemma81

I’m so sorry to hear you are going through this.
I’ve sent you a friend request.
I too experienced similar symptoms when I was first diagnosed in May 2016.
Started in the toes then creeped all the way up to my waist! Initially, I felt like I was walking like John Wayne! It then became really frightening, I was admitted to hospital, given a painful lumber puncture, MRI and a 3 day course of IV Steroids. Drs were talking about a compressed spinal disc or brain tumours. To be honest, I was almost relieved when they started to mention MS after finding an old MRI (I had very little knowledge of MS).
My neurologist warned me that I would get worse before going back into remission. He was totally right and at one point my brain seemed like it had completely forgotten how to walk.
My old MRI was taken due to an episode of double vision in 2007, which they put down to a viral infection but according to my Neurologist was actually the presenting symptom of my MS journey and lesions were noted.
Within that 9 years I had an episode of right sided numbness with pins and needles, which my GP diagnosed as shingles (I never developed a rash, only that awful rundown feeling) I also had several episodes of facial numbness which I never worried about or reported.
I’ve had at least 2 relapses since diagnosis and struggle terribly with fatigue which has affected my balance and walking but I’m still working and remain positive.
The downstairs problem took about 6-8 weeks to completely feel normal but for me it was horrible and really frightening!
I still get severe pins and needles in my legs and bum if I’m stressed tired or walk to quickly (which is pretty impossible these days 😳) otherwise the downstairs problem returned to normal 😉.
This site is great, almost like a comfort blanket.
Gemma, feel free to message me anytime.
Lisa x

10 months ago

Apologies for * creeped not crept!!

10 months ago

I had that symptom 40 years ago,5 years before my first exacerbation(ON) and DX. Went to my GP back then and he suggested changing my socks twice a day(????????). Anyway it got better on its own without treatment but I think I still have some residual feeling loss from that attack. No meds for it back in the 70s.

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