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Changing shape

Hi all,

Bit of an odd one. I’ve been feeling pretty good, so good that I’ve been to a yoga-type class. Have discovered that when lying down I can’t lift my right leg. There’s no pain, I just can’t lift it more than a cm or two, and even that is a huge struggle & it starts to shake. I also noticed that it is a different shape to how it used to be. There is now a defined ridge down the center below my knee, which I’m assuming is my shin bone. The muscle (or tissue?) to the left of it (looking down, so the inside side of it) is less than it used to be, and it looks noticeably different to my left leg.

Possibly related - my feet changed shape last year. I’ve never mentioned it to the GP as the podiatrist I was seeing told me that it was my bones collapsing inwards. Looking back on it, it seems ridiculous that bones could move like that, with no pain involved, but I just accepted it, and it’s only the change in my leg that has made me question it. The area of my feet between the big toe joint and my ankle has less tissue/muscle to it, so my big toe joints really stick out.

Are these things I should add to my list for the neuro or mention to my gp, or are they the products of not enough exercise and poor fitting orthotics?

Paula

If one limb has become markedly under-powered in a particular direction for no apparent reason, that is definitely one to pay attention to. As ever, make a note of what happened and when and try that exercise again from time to time to see what, if anything, changes. I would talk to your GP, I think, and seed advice there.

Unless your exercise regime features a lot of exercise involving only one leg (not terribly likely) then it isn’t obvious to me that lack or excess of exercise would cause weakness of one leg in one particular plane of movement without any sign of pain or injury. But I don’t know much about you and a big fat zero about physiology or medicine, so don’t set any store by that. You need to talk to the experts.

Alison

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Hi Mali,

At first, I was going to reply “of course not!”, but it’s just that I never really thought of what you describe as “changing shape”. I don’t know why, it’s funny really, because individual muscles did change shape, for sure. I suppose it’s just that when I read your thread title, I imagined a different kind of shape change, such as developing a hunchback or something.

But thinking about it, yes. I was not diagnosed until 44, but on my 40th birthday, my parents came to visit, and we all had dinner, and a night at a smart hotel.

After dinner, and not a little alcohol, we went back to one of the rooms, and the conversation turned distinctly odd. My mother asked: “If you thought you might be ill, would you tell anyone/do anything about it?”

I had no idea of the context to the question (with hindsight, I now think my Dad was ill, or starting to believe he was, and they were deliberating whether to tell me).

However, coincidentally, I too was beginning to nurse suspicions about my own health.

So I answered, honestly: “I don’t really know, but now that you mention it, what do you think about this?” I was wearing a short summer dress, and indicated my legs, both of which had developed a sharply defined “groove” down the calf.

My dad, always muscular himself, was baffled, and said: “I’m not sure what you mean, Dear - that’s just your muscle, isn’t it?”

I conceded: “Yes, I suppose so, but they didn’t used to be like this!”

Actually, rather than looking withered, my muscles looked extremely well-toned, as if I’d been working out. Which would have been understandable if I had, but why would a 40-something, female, couch potato office worker suddenly GAIN muscle mass, without even trying? Yes, my legs were shapely, but I didn’t do anything to cause it. And, at the time, I knew of no disease or condition that could actually increase muscle tone, so was at a loss to explain it. Just had a sort of vague feeling of: “This is strange”.

I now know that a very definition of spasticity (a common symptom of MS) is increased resting muscle tone, i.e. muscles stiff and firm, even when NOT under stress.

So I had extremely chiselled-looking calf muscles - as if I’d worked at it - resulting in a visible dent between calf muscle and shin bone.

Dad didn’t ridicule me, exactly, but I think he thought I was - at least - eccentric, to be worrying about “shapely” calves. But I just knew it wasn’t normal for me! I’d never been fat or flabby, but I didn’t used to look like a sportswoman, either!

Of course, being preoccupied with my own strange changes, I’d totally missed the cue that perhaps one of my parents suspected their own health.

Dad turned out to have cancer - which, on that occasion, was completely cured using keyhole surgery!

Sadly, his reprieve was brief, because a year to the day after being given the all clear from that one, he was diagnosed with another, unrelated tumour (not a metastasis of the first). This one was a different animal altogether, and not a candidate for keyhole surgery. He would survive just 18 months.

Anyway, that’s an aside - Dad died before I was diagnosed, and thus never found out my suspicions had been right about the legs! I have since spoken to Mum about it, and she admitted they’d thought it “rather odd” that I was concerned about apparently healthy and well-developed muscles.

Of course, like me, they didn’t know of any conditions that can stealthily increase muscle tone, either, so I think they thought I was bonkers.

I wish I’d got answers before Dad died. Not to say: “I told you so!”, exactly, but just to explain what had been going on, and that I wasn’t nuts.

But equally, sometimes I’m glad he didn’t know, because I’m sure he’d have been dreadfully upset. Especially as, although it’s not technically hereditary, we believe it “came from” his side of the family - one of his aunts had it. He’d have been mortified that any child of his was “defective” in any way, especially if the evidence was that the predisposition was likely to be through him.

But yeah, different-shaped (in my case nicer) legs. And getting a bit of a six-pack I didn’t work for, either. It’s all to do with nerve signals to my muscles being wrong. Getting told to contract, even when they don’t need to, so they’re working hard, even when they’re resting.

Why I wake up every morning feeling as if I’ve done a really gruelling session in the gym. My muscles have been getting “squeeze hard” instructions all night, which is only partially alleviated by the cocktail of drugs I’m on.

Sadly, despite looking rather nice, my muscles are hopeless, as they’re always sore and exhausted from all the unnecessary work!

Tina

x

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Hi Paula,

Definitley mention it to your GP, though lack of exercise causes muscle wastage like you describe with your leg. Just before I began to get physically symptomatic 3+ years ago I was into the gym and was body building. As my symptoms developed my muscle began to shrink on the right leg, around the knee and quads. I have not been to the gym or done any kind of body building for 3 years now. The difference in muscle definition on my left and right leg is quite staggering! I only compared my muscles a couple of weeks ago as I am struggling with strength going up and down stairs.

As a result I am doing daily (supported) squats and lunges to try and build up some muscle to support my knee and make stairs a bit safer.

I can’t offer any suggestion on feet, my friend has a collapsed arch and struggles with exercise and her weight as a result.

I can’t lift my leg higher than a couple of cm now. I can’t walk on my heels and my toes have barely any sensation or movement at all, makes them a bit of a liability when bare foot.

I’m starting to appreciate the value of physio.

Good luck

Nikki

Thank you guys. Will go and have a chat with my gp about it. I’ve started worrying about wasting her time, so keep doubting my own instincts. Prior to August I was super fit (overweight too though!), and had really well toned, strong legs thanks to all the spinning/cycling I did. It was only when I was struggling in class that I properly looked at them. My hubby looked and can see the difference, but didn’t think that there was anything to worry about, but then there not his blinking muscles!

Tina, that must have been tough coping with. My mum passed away with breast cancer years ago, & it’s a hard thing to watch. We live a long way a way from my family (Highlands of Scotland vs South Wales), so I only get to speak to my dad on the phone. He never thinks to ask me how I am, and appears to have forgotten the conversation we had about my leg going numb & me tripping up all the time, & him offering to pay for me to go private!

I’ve no idea how to tell him I’m still far from alright. Him and my step-mum are arriving for a weeks stay in Feb, two weeks after my MRI. I’ve absolutely no idea how to approach the conversation I’m going to have to have with them. My step-mum has a habit of drinking too much and then getting really emotional about things, which I can’t cope with! If I actually knew what was wrong it would make it easier to tell them, as I could focus on the positive aspects. Can’t imagine that I’ll get any results from the MRI anytime soon.

paula

You will be the best judge of what (if anything) more to tell them at this stage. You probably need the lachrymose sympathies of a sloppy drunk step-mum like you need a hole in the head, though - particularly if you are feeling a bit fragile about the whole business (and you probably are). It probably isn’t practicable to limit your communique to a brisk, factual update on the morning of their departure and before the sun is over the yard-arm, but it’s worth a thought.

Families, eh? Good luck.

Alison

Thanks Alison.

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