dianevh 24/05/17
Last reply 8 months ago
Leg Issue – Numbness

Hi, I am new to the site and was diagnosed with RRMS 1 month ago approximately. I went into the hospital on 4/24/17 and after 3 MRI’s for validating, I was told the dx.

I have been dealing with my right side from waste down being numb, it got much worse after I was discharged from the hospital. Has anyone experienced that? My full leg, ankle foot, hip, buttock, and nether regions 🙁 ; all numb! It feels like swollen to the point of no feeling, yet it hurts to touch or if I bump something, or a frozen feeling? There is no swelling though, just all the feelings like it is.

What am I dealing with do you guys think? Has any one else had this type of numbness? It started in one spot on my thigh a week after hospital stay, and has moved through the whole side below my waist. I am so worried it’s something else as well as the MS?

All of this is scaring me and I am still having a hard time processing this life changing diagnosis. I could really use someone to tell me their similarities. I know we are all different though, but so many of us are here, maybe someone has my same experience?

Thanks for reading, Diane

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stumbler
9 months ago

Hi @dianevh and welcome.

Sensory symptoms are unfortunately part and parcel of MS. There’s some more details here regarding this symptom and what can be done to relieve it.

https://www.mstrust.org.uk/a-z/altered-sensations

But, just generally, when symptoms rear up like this, it’s your body telling you that it’s unhappy with something you’re doing. This could be getting over-tired or getting stressed.

Given your circumstances, I should imagine your stress-ometer is presently reading high.

You need to sit down and take a breath, whilst you try and come to terms with the diagnosis. Take some me-time and use this to learn about this “uninvited lodger”. There’s some sueful reading material here :-

https://support.mstrust.org.uk/shop

The “Newly Diagnosed” section would seem to be a good place to start.


moonbeam
9 months ago

Hi Diane I’m new to this site also – I’ve read a lot of the posts and conversations and I think it is a very helpful site with lovely people on it. You’ve obviously still getting your head round the diagnosis it’s a shock.(to put it mildly) – it’s was a shock to me even though I’d been having years of symptoms.
I finally went to the Drs again after I also went numb from the waist down – it started with a funny sensation in my feet that felt like I was walking on cotton wool – thought I must have tied my trainers too tight. I then was numb like you from the waist down – everything was numb. I thought this is definitely not normal and went to the Drs again because I was worried in case it was either ms or a tumour on my spine- I’m not a hypochondriac but I knew it was going to be bad news either way(years of funny sensations). Hence itstarted the ball rolling and I had an Mri and lumber puncture which dx ms. But I’m no different from anybody else and have weird symptoms which I think only somebody with ms can understand – that’s why I think this site is good and uplifting as well – with many people getting on with the challenges ms presents.
You’re not alone and stay strong moonbeam x


molineux1047
9 months ago

@dianevh I am experiencing pretty much the same as you down my right side waist down. Its been like that for about 2 weeks. I was diagnosed in April this year. It is very hard but I hope – like other symptoms – that it will go again soon. I just try to do exactly what I did before and keep active, stretching my leg and lower back to see if it helps. Im also taking @stumbler advice and I think it may be linked to the stress of the diagnosis if Im honest


dianevh
9 months ago

Thank you @stumble @moonbeam @molineux1047
I really appreciate the feedback and I am 100% sure the stress of this and needing to do my job, that was already stressful, is the culprit. I am still having a hard time wrapping my head around this, but each day, and reading the posts is helping. 💜


dianevh
9 months ago

Sorry @stumbler, with an “r”…spell check got me!


columbosdog
8 months ago

Hi Diane

Your story resonates with me though am in limbo land at the moment awaiting some sort of dx.

I first had a weird pain in my front left thigh which continued to get weirder and more prominent. Then my left leg and foot went numb followed by the left side of my back from bra strap down. Then it went around my side, left stomach and down to my groin. Weird numbness, burning pain, buzzing legs and torso, unsteadiness, vertigo… the lot followed afterwards. Lots of tests and GP visits happened. A diary of symptoms I couldn’t believe.

Four months later I’m waiting for the results of my lumber puncture and second set of MRIs (I have multiple lesions in my spine and brain). Another month to wait before some sort of clarity if not a dx but thankfully, my symptoms have subsided a bit. I thought I was going mad… and it all started from a pain in one spot of my thigh. I’ve never seen anyone else say that! Scary stuff but you aren’t alone x


dianevh
8 months ago

@columbosdog Thank you for telling me your story, so much like mine. I am sorry you are dealing with this too, but grateful that it’s not just me who is having such a weird experience. You say the symptoms are subsiding some, and it took four months for that bit of relief? Do you still feel weird in your leg and torso? I hate that you are waiting to hear results, that has to be so difficult. I am still trying to wrap my head around this at all. With so many of us with many different experiences, it’s hard to NOT think I’m going mad! I hear ya!! I’ve read a lot, and you are the only person I have read that had it start like we did.

I don’t wish this on anyone, but thank you for being there and reading. You’ve lightened my heavy heart a bit today. Thanks, Diane


columbosdog
8 months ago

Yes I noticed some relief a few weeks ago and it’s gradually subsided. I still have some occasional burning in my torso and leg though am on Pregabalin for the nerve pain. The burning in my torso was a later addition to my symptoms (about 2 months ago) but the burning in my leg has been consistent since the outset. My foot is also pretty numb as is my knee. I’ve lost the vibration sensation in both (there’s a long technical name for it).

Aw thank you. It’s a really weird time and my emotions are up and down but am ok. I am working full time and my workplace is so supportive – it really helps.

I have never seen it mentioned either Diane. I actually thought I had a trapped nerve or had injured my leg in some weird way! Am glad it has helped (in a weird way). It’s helped me too. Thank you

Chris


ghodder
8 months ago

I was diagnosed about a month a go but have had issues for about 10 years… and the one thing that always happens during a relapse is a numbness on one side of my body. I think any other symptoms that presented could be put down to other factors and I may have missed a lot of them but when you spend months at a time not being able to feel one side of your body it becomes quite concerning. People kept saying trapped nerve etc but I knew it was something more as nothing helped.
The good news is I had my last relapse last year and since then everything has returned to normal. I still feel as though every time this happens I lose a bit of strength in my leg especially but everything else seems to come back. obviously this presents so differently in everyone that I hope you to have the same as me and find that it may subside over time.


tracyd
8 months ago

The numb thing is so difficult to describe, for me it felt like the skin had no sensation but the ‘meat underneath’ did. Even accupuncture with electric stimulation didn’t help.

The sensory changes to my left hand made it feel like I had a mobile phone constantly vibrating under my skin – it’s not that I couldn’t feel – it just didn’t make sense at all because the buzzing over-rode everything else.

On a bright note, now I’ve had my Lemtrada things have got back to normal, my sensation returned over time and is ‘normal again’ (apart from the left hand buzzing thing) If I massively overdo things I do have pseudo symptoms for short periods of time until I’ve rested and recovered.

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