Forum

MS and Legs

Hi just wondering how MS effects other peoples legs.  with me it appears that everytime i get an illness (ie heavy cold, urine infection, or just generally really run down) its my legs and lower back that bears the brunt of it they are heavy, tingly and i am just aware they are there 24/7.

i am newly diagnosed with MS after a few years and thanfully have had no relapses in 4 years now so i know in some cases i am in a good place with this MS.  I am on gabapentin to help with the tingling etc but its the times when i feel like that i spend hours lying in bed trying to sleep, altho last night i found an ice pack between my knees was the answer or a heatpack strapped to my back sometimes all day seems to help too.  i dont need any sticks etc to walk its just the feeling.

i find this really frustrating and upsetting at times, but i do look forward with a positive attitude and keep going to work etc.

any help would be appreciated

Juliex

Nobody has ever understood what I mean when I say about knowing that my legs are there 24/7. 

 

I also know what you mean when you say about everytime you get an illness. I can't just get a cold. That's bad enough. I get a cold combined with losts of MS related aches pains and twitches. 

 

One of the strange things for me is when my legs and feet go numb. A few people have questioned how I can walk if I can't feel my legs properly. It's difficult to explain. I guess I can do it because I know the mechanics of it so just walk like I always did. At those times I have to avoid cobble stone floors though because they are too unstable. I can't feel what I'm standing on properly and am likely to have fallen over before I've even realised my feet weren't planted stably. 

 

Icepacks and heatpacks etc have never helped. I just up the gabapentine when it gets bad. 

 

Seren

Hi Julie,

I find what you describe to be "normal" for me, with MS.

I'm sorry I can't offer much more insight than that - I think it's just part of the illness.

I think the reason most people (not all) with MS experience greater problems with their lower body is simply because that is the longest "stretch" of brain and spinal cord that nerve signals have to negotiate.  If lesions (think of them like blockages in pipes) are pretty random, then the longer the route, the more chance it will be affected by one or more lesions.

Or to put it another way, if lesions can be anywhere along the whole length of the spinal cord, they are ALWAYS going to be above the feet, but might not always be above - say - the breastbone.  Hence the poor old feet/legs are affected by more lesions than the upper extremities.

Tina

x

Dear Julie,

Sorry to hear that you are just diagnosed - I've had MS for almost 13 years (I think but I was told that it could have been longer?). I sleep with a 'pillow' between my 'knees'.

Please 'be wary' of any advise (including mine) that you are given - the 'condition - MS' is as different as it can be for over 100,000 (so I'm told). Relaxation (if possible) can be a good state to be in? Try NOT to worry and make sure that you get a 'FLU JAB' (in the winter) - It's free anyway and I don't find it sore at all - in fact, if I turn away, I'm almost unaware that the 'nurse' hasn't given it too me! It can be a 'Pig' if you get flu with MS - I've had it once (I'm 55) and I'd prefer not to have it again.

Don't 'shy away' from MS - If you HAVE IT THEN TELL PEOPLE - it's not INFECTIOUS.

BE GOOD TO YOURSELF - DO WHAT YOU WANT! (See if you can get a 'MOTABILITY CAR' it can be free as well.

LASTLY, - Could you tell me of any 'benefits' that you 'find' - I've found that you can still 'learn' things 'day to day' and try to be aware that there are some things you can do - and some you can't - On a 'day to day' basis YOU FORGET THAT YOU HAVE MS! IT CAN SOMETIMES BE 'EASIER' WHEN YOU ARE 'SEATED' (AS I AM JUST NOW AT THE COMPUTER) - YOU DECIDE! TRY NOT TO WORRY ABOUT WORK! - YOU DO HAVE PROTECTION (LEGALLY).

MAYBE I'M BEING A BIT 'OVER-ENTHUSIASTIC' BUT IT'S NOT A CONDITION THAT YOU SHOULD 'WORRY ABOUT!' YOU SHOULD FIND PLENTY OF FRIENDS ON THIS SITE (WHO HAVE MS) - OR NOT (IF YOU DON'T WANT!)

Marcus.

(Sorry to hear that you have it BUT YOU ARE IN CONTROL!)

hi all 3 replys are great.  i have an apptwith my neurologist and i am going to take questions with me to ask. i feel alone with not knowing whats rigt or not. i have a lesion on T4 which prob doesnt help and i had a prolapsed disc  years ago which was the same time as my 1st biggy MS symptom hence why it tookso long to be diagnosed.

i dont qualify for any  benefits as i can do everything except stop the tingling in my legs altho today i did feel like i was walking in someone elses legs/feet.  i work 2 part time jobs which i think if i didnt do iwould just lie in bed depressed which is no life for anyone.

its jst so confusing as i got diagnosed, i go to the dr when i feel unwell which in the last year was a lot and i am not at the stage when i can tell everyone.  Suppose that takes time :-)

 

thanks for reading this

Juliexx