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Still bleeding well here!

Hi all

I can’t believe that 2 years on I’m still here. I recovered from the original event really well over a period of several months, but now I’m not sure if I’m getting slightly worse.

My gp says that I don’t have foot drop as I can lift my foot, but there’s something not right with it as I keep tripping up with that foot at work.

I have excruciating pain in my right thigh, like someone putting an axe in it. My right leg often aches like it’s super tired, when it’s done no more work than my left. Sometimes it feels like my leg is in a vice. Thankfully these pains aren’t constant. They do seem to get worse in the cold though, but my gp says that weather doesn’t affect pain.

I do spin class and my right leg fatigues quickly - thankfully my left is super strong! My right calf muscles also flickers when I peddle super fast. My gp says they are fasciculation but I get them when my muscle is moving. They stop when my muscle is at rest, which seems the opposite of what they are supposed to do.

I also get hideous fatigue some days.

I have no diagnosis, and gp unwilling to refer me back to neuro without anything ‘new’ happening.

I initially tried to see the physio to help with my weakened right leg and foot, but again no go. Neuro physio won’t see me as it might not be neurological related as I have no diagnosis (despite me prescribed amitriptyline by neuro) and normal physio wont see me as it’s probably neurological-related.

So here I am forever more! Isn’t life fun!

Paula

What a to do hun!

They just leave you to your own devices at times!

What about a private physio for an assessment?

Pollsx

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I am sorry to see you back, Paula. (With apologies if you have not actually been away - it’s just I had not noticed your name on here for a while…)

I think your GP is being a wee bit literal on the foot drop thing. What’s so magic about that term? I don’t think of myself as having foot drop because I can still get the foot on the bad side to lift up more or less OK until neurological fatigue sets in and it’s game over until its rested, but that’s all on account of permanent residual MS nerve damage, and it doesn’t need to be called foot drop or anything else to demonstrate its credentials as a characteristic hallmark of MS. Motor nerve damage is motor nerve damage.

However, If I remember right, you have had an MRI and all that? If a second MRI isn’t likely to show much change, there is a real question to ask yourself about whether it is worth pressing for another that is unlikely to show much change and so would get you no for’arder, but maybe with an over-anxious patient label thrown into the mix? There certainly is much to be said for waiting and seeing, however infuriatingly hard that is. If something serious is amiss, it will declare itself when its good and ready to. It is weary work, trying to force that pace if the medics have already investigated and not found anything definitive. Maybe there’s a case for being patient a while longer, keeping careful notes and keeping your powder dry?

But I don’t know. You know how you feel and that wil, of course, l always be your best guide.

Alison

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Been thinking of going private, but need to look at costs.