Hi I’m new to this forum.
I was wondering if anyone on here has has their feet legs and bottom go numb with PPMS. My feet started going numb last week and it worked its way up to my waist. I’m finding it hard to walk properly. I spent a couple of days in hospital last week with this, I had a MRI which showed up a new lesion on my spine. But they couldn’t find why I’m numb. I was diagnosed 7 years ago and never had this feeling before.
Smiles,
So sorry to hear this.
I have numb feet. Have had for 8 years now. It came on overnight and within 24 hours went up to my waist. Couldn’t feel if I needed to go to the toilet. After about a month it started receding. I was left with practically no feeling in my feet. I sometimes get times when my legs start going numb again, when I have done too much.
My feet are also boiling hot or freezing cold, nothing in between. I can still walk, slowly and often with help.
I hope your feeling comes back soon.
I am sure you will have other replies to your question.
Take good care,
Anne
x
PS got PPMS too
Thanks Anne, had it for 2 weeks now, has slowed me down a lot, awaiting to hear from my specialist as I only saw my MS nurse a month ago. Hope it disappears soon, it’s driving me crazy. Sandie x
Hi anne.i also have either freezing cold or burning hot feet.Its just another thing we have to up with…This rotten illness just goes on and on.Thank goodness for this forum.Take care Jox
Just spoken to my MS nurse and she said I’ve got to go to my Drs tomorrow to do a urine test to see if I’ve got any infection, if not, she said she will call me back on Monday to see what else she can suggest. She rang me even tho she was away on holiday.
sandie x
Sandie your MS NURSE sounds great, all the MS nurses seem to go that extra mile. I get numb feet and anus I cannot feel a motion but the bit in between is OK. But sometimes I will get an arm or a hand. Urine test is a good start and ask for bloods as well last time I had what I thought was urine infection turned out to be something in my bloods Heather will know what the name is but she is asleep. My memory is awful.
XXX Don
Sandie your MS NURSE sounds great, all the MS nurses seem to go that extra mile. I get numb feet and anus I cannot feel a motion but the bit in between is OK. But sometimes I will get an arm or a hand. Urine test is a good start and ask for bloods as well last time I had what I thought was urine infection turned out to be something in my bloods Heather will know what the name is but she is asleep. My memory is awful.
XXX Don
My MS nurse calls it a pseudo relapse, UTI’s seem to mess up everything. Hope you can get some help tho. My feet are different temps most of the time and it’s so annoying
Sonia x
Hello, I’m also numb up to my chest, have been since Dec 2014 when diagnosed. My feet also usually feel v hot or cold. I’m currently taking Gabapentin, but not sure it is doing much.
Went to the Drs and haven’t got a urine infection, so,just got to wait until Monday.
Thanks every one for your replies
xxxx
Hi Sandie
Hope you are feeling better.
Pam x
Hi everyone,
got another relapse and it’s worse than the last time. I saw my specialist on the 5th July, the feelings had come back in my feet and legs then, but whilst on holiday this week its started again, so I rang my specialist as told at my appointment and all I’m going to get is a letter sometime this week. What’s the point of telling him when I get a flare up and just sending me a letter. This time it’s up to my ribs and making it hard to walk.
Sorry, rant over. Hope you’re all having a lovely weekend xx
Hopefully you are a good remitter and make a decent recovery, but it doesn’t sound much like PPMS. Are you taking any treatment to help stop relapses?
Hi Smiles,
i hope you get remittance again soon too.However, the ‘categorisation’ of MS is not very clear cut. My very first symptom, that I noticed at least, was numb big toes. Gradual progression exactly following dermatone patterns proceeded upwards to my sternum over a year or so. Sadly, that was 2012 and is all still there; numbness however is also a varied beast. I have no light touch or vibration, but temperature and pain are normal. So I got a Ppms diagnosis. But then, my balance came back, and galloping progression of ticks, twitches and other ms classics slowed, some receding a little, unless I am tired. But really recovered, other than balance. So after a 3 year solid progressive decline, other than balance, in 2015 my neuro started me on Tecfidera. My category is unclear. He writes relapsing and of progression but carefully leaves out an actual category. RRMS, PRMS? Just a good long plateau? Who knows. A year or so on Tec, and no new progression, perhaps a very slow improvement all round, but that may just be my acceptance and management of my spoons now.
I would offer that I now can’t remember ‘normal’ sensation in my feet and legs, but it is much easier to walk as this is now my new normal.
best wishes
Sian
Hi everyone, sorry I haven’t replied to your answers. I’m still awaiting that letter that my specialist promised me last week. My feet feel like all the bones in my feet are crushed and so uncomfortable, I’m having more pain now when I walk, I’m considering taking myself back to hospital as I’ve has enough of this pain. Anyone have any advice that will help me
Sandie xx