Aaaahhhh. Numbness and limbo land

Hi there

I have one lesion on my spinal cord - loads of symptoms, have been found positive for oligoclonal bands, negative for optical neuritis. My neuro has said that my numb feet and leg (which is probably my main symptom) could stay the same, get worse or maybe even get better (ha ha). If I develop a further lesion anywhere, then they would diagnose MS. My main question please is does anyone else have continuous, but changing numbness in their feet. It doesn’t stop me walking but hurts like hell. I have to use a stick now as my balance is awful too. I cannot bear anything on my feet so am dreading the cold weather coming. I read about relapses but my symptoms have been continuous since March. I’m taking gabapentin which helps enormously with lots of things such as my L’Hermittes and RLS. Three years ago I was diagnosed with ME but last week my neuro said he thought that I didn’t have ME at all - he thought it was all down to this!! I’m confused, fed-up and feel like I’m in limbo land.

I’m not even sure what I’m asking - but hope someone can put a virtual arm around me and send a hug if nothing else. Thanking everyone in advance

Hello, I can relate to the feet numbness. I am undiagnosed but have my first Neuro appointment in October. My feet have had this numb type sensation for over a month now which is a newish symptom. I can still feel them and can feel pain and touch but can now tolerate light touch to my feet which I could never ever do before!! It is so weird to describe, numb without being completely numb :confused: My balance is bad and I know I will fail any test the Neuro does! Sending you big virtual hugs Sam x

Hello to a fellow Pink Lady

I know it feels like forever, but some relapses can last a lot longer than 5 months and still recover so there is still a chance that your symptoms will improve. Time is a great help too - not only because it gives our body a chance to recover, but also because it allows us the chance to learn how to deal with things. So try and stay hopeful.

Here’s the virtual arm and the (((((hugs)))))

Karen x

hi pink lady,

Hope this makes you feel a litle better!

I had an array of symptoms also which started 6th march 2012…then 4 weeks ago most of it just went away!

I had bad tingling, buzzing…total left side numbness amongst other things!

The only symptoms i have now is slight tremor left and cant feel temp on left side body…other than that all good!

So i was frigtened also but after 5 months i am much better! so there is hope…be patient and if it is ms then i sure it will remit at some point!

Good luck and hope you feel better soon !

Lea xx

PS. I am undiagnosed as yet…but limbo is a friendly place on here!


Hello from me too.

I dont have the numbness mine just hurt like hell,but I’m with you with the balance.

On my journey I had periods of time with burning pains and loss of balance that would completely disappear and then Oct11- Feb12 I had along relapse that for the first time left residual problems.

It doesnt stop normal life resuming though,and you will feel better. If some things remain they quickly become the new norm and with the right meds can be well controlled if troublesome.

Hope today is a better day for you.


Hi I was dx in June but my main symptoms started in feb/march to. My balance is still bad but numbness in feet seems to have mainly gone now. My arm and hand continue to be a problem though. I remain hopeful that there is still room for improvement. Try and stay hopeful things could still get better. I saw physio yesterday who is going to do a more detailed assessment of my balance (as I cannot stand with my feet together without falling over) but suggested some gentle exercise and using a Wii balance board…although I’m not convinced I won’t fall off! Lol Stay positive Mish x

Well - thanks to everyone who replied. I am feeling a tad more positive. Thank you all so much. I’m sure I’ll have more questions/moans soon.