Forum

HELP!!! Sever numbness for first time and scared.

I’m attending the inquest into my brothers death and it’s been the most stressful experience of my life. Stress is my main relapse trigger but I’ve not had this before.

From the bottom of my spine and between my thighs are completely numb. I can’t even feel it when I go to the bathroom. The soles of my feet are tingling like mad and there’s some numbness in my toes. I have on and off tingling in the palms of my hands and when I walk it’s like I have cusions on the soles of my feet.

My local MS clinic is a fair drive away and no where near my family so I don’t want to be stuck in there for 3 days in the ward on steroids as I need to be around my family at the moment. I’ve always been told that’s the way they give steroids for a quicker recovery. Is there a way I can have steroids without the IV? I really need to be in court every day as it’s very important to me that I know all the details. I really don’t mean to sound stubborn and under my bravado I show to the family I’m really frightened. Up till now my worst symptoms over the past 3 years has been recurring optic neuritis so this is all very new to me.

If I call NHS 24 over the weekend will they help me be seen at hospital? As this happened throughout the day and came on quite quickly, I haven’t had the chance to call my GP surgery for advice as I’ve been in court all day. Any advice would be highly appreciated. Sorry for the long post and the self pity. xx

Hi Littlemiss. I’m going through nearly the same as you. I have a numb left bottom cheek and am numb between my legs. I also have a slight numb feeling on sole of my left foot. I contacted my MS nurse yesterday by email and she said they wouldn’t offer me steroids for it. Although my GP the other day said let him know if I wanted steroids. The advise given to me by the MS nurse yesterday was this: ‘Steroids are not indicated with the symptoms you have and it is sensible to rule out a bladder infection too. We would normally reserve steroids for symptoms that er delibitating or disabling. You need to generally look after yourself well, good diet, plenty of fluids and rest and hopefully things will settle down’.

I would suggest this… do you have a walk in GP centre nearby? We have a 111 centre near us and also a hospital walk in weekend GP clinic not too far away. I would go to see a GP and get a urine test done to see if you have an infection. You could always phone the 111 service and ask there where your nearest weekend GP surgery is. How you feel better soon xxx

Was put on oral steroids yesterday by MS nurse as I’ve had similar problems to you over the last 4 weeks. Have you tried the MS society helpline for some advise of where to go and what they think might be happening. So sorry to hear what you going through at the moment:-( take care as best you can, but I’m sure it can’t be easy for you or your family at this very hard time.

Hi What a horrid time for you, I’m sorry. Been through similar with my dad and I understand just how important it is to be there. Re the numbness, it was my first symptom and has moved around my body. My MS nurses’s view is that steroids are really only suitable when symptoms are debilitating. I’ve never been offered them and have had recurring O/N, numbness and now severe ear/balance problems. As said above, my understanding was steroids only speed the relapse recovery. It would be worth just ringing 111 and taking advice. I had a wkend of 111 contact last wkend. The GP’s were great but didn’t really understand MS symptoms etc. I was very poorly with Labrynthitis and they didn’t contact any neurology specialists etc. Do let us know how you get on. L x

Hiya, I bit the bullet last night and contacted the out of hours service at my local hospital. Because I can’t feel going to the bathroom and that the numbness is getting worse quite fast I got oral steroids and a prescription for more. I have a slightly raised temp but my urine was clear but the doc has given me antibiotics just to be on the safe side as I won’t feel any symptoms starting due to the numbness from my hips down. This is my 1st relapse where I’ve got a bit frightened and the first time I’ve accepted the steroids offered. Now to get the prescription cause none of the pharmacies near me stock them! Once again out of hours have helped and they are sourcing some for me and I’ll pick them up this afternoon from my local pharmacy. Thank you all for your help and kind words. This forum helped calm me down a bit and put my partners mind at rest too. Thanks again. xx

Glad to hear you feel better about things xx

Glad to hear you’ve got some meds. Take it easy and hope you’re feeling better soon.

Jen x

Hi,

This happened to me quite soon after diagnosis. I was in the shower and suddenly I went numb from the waist down. I was absolutely terrified.

I made it a rule to go for a pee every hour and as for crapping, I hoped for the best!
I was living in Asia then, with fabulous private healthcare, so I phoned my neuro, who was in another country(!) and he calmed me down.

It was part of my relapse that got me diagnosed and so I was prescribed Neurontin, which did nothing much and like all other relapses, it went away with time and fortunately never returned.

I hope you have the same luck. It was strange having a numb bum and making myself go to the loo by the clock.

best wishes,

K

ps that was 14 years ago. I’m still continent. (phew!)

Hi Littlemiss

If it’s any help, I know exactly what you are describing. I have had it twice two years apart - and something milder in between - in fact it was that which led to my diagnosis. The last time - in March/April this year, I became numb over time from my chest to my toes - with all those loo problems you mention! Each time it has gone away after a few weeks. I hope yours does too. I didn’t have any drugs but I am told that steroids might make the symptoms get better more quickly.

One consolation for me was that the impact was sensory and that I could still walk and do most things.

Very best wishes to you

David

Hi Littlemiss just wondered how you are and if the steroids have been ok? I still have my numbness, I think between legs has improved a bit but the numb left bum cheek has migrated down the back of my left leg and under left foot on sole I have a numbish pad feeling. I think it must be improving in some ways. Anyway do let us know how you are H xx

Hiya, sorry not been on recently, had loads going on.

The steroids made me feel so depressed and aggresive I went back to my GP and he advised me to come off them. I did and the numbness calmed itself down over 3 weeks. I still have some numbness left in the toes of my left foot but that is all.

The tingling in my feet became unbearable at one point but I battled through it by resting but making sure I was out in the sunshine for at least half an hour a day for the sake of vit D.

Thank you all for your kind words, they really have helped me through it. Now to look on this site about gluten intolerance. Everyone I know who has MS (a surprisingly large amout of people in my area have MS including my Aunt and close friend) have been told to follow a gluten free diet. I’ve only just found this out after chatting to them about the issues I’m having with my tummy. I also have unexplained infertility which is another symptom of gluten intolerance. Trying to get an app with my GP is like trying to find a hen with teeth! But I’ll keep pestering the surgery till they see me lol. xx