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Leg pain

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Hi to all haven't been on here for a while, just been plodding on with life with a few hiccups along the way, i've been on  Gilenya for 6year's come April well taken alternative day's been ok till last few week's my leg's feel so heavy and hurt all the time, I have episode's of feeling like my leg's are cold inside so weird feeling, from the minute I get up I ache then when I stand pain in my leg's start  is this normal? this sight has alway's been great for  help :faint:xx

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@suzysue , pain in the legs (or arms) is a quoted side effect of Gilenya. Although, I wouldn't think that this was normal if it's only just started after six years on this drug.


I'd report this into your MS Nurse and see what they say.



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John aka Stumbler (as I do fall over!)

Illegitimi non carborundum


"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Nice to see you here again, SuzySue (although obviously not for reasons related to MS!) :flowerface:


I'd tend to agree with Stumbler that it's unlikely to be due to Gilenya after six years.


Heavy achy legs can be common in MS. I'm not on any DMDs and I get painful legs too. They pretty much permanently feel heavy these days, in varying degrees. Sometimes, they ache like mad. They're at their worst in the mornings, when they're also stiffer. I also occasionally get it where they get quite weak when standing up from my sofa after my morning cup of coffee; it's a weird combination of stiff and weak at the same time, which in turn makes me wobbly, but it goes after a short while of standing on the spot and then carefully and slowly walking away.


The sensation of feeling cold inside might be some form of neuropathic pain? Similar to how some of us get a sensation of hot or cold water trickling down our legs?

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(belated DX in June '05, SPMS)

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Thank you both haven't been back on for a few days couldn't get my password right terrible mind :blush3: xx

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HI Suzysue,

I would tend to agree with the consensus. From experience I have found that if medication is going to be a problem, then its a problem early on. The only reason this might be different is if there has been a change in other medication.

It is certainly one for the professionals.


I too seem to calling in as I pass at the moment.

Life and zero energy make it difficult to even simple things like post on a forum. A bit pathetic really but thats MS for you.


Paul X

We're just two lost souls swimming in a fish bowl, year after year,

Running over the same old ground.

What have we found?

The same old fears.

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