Sorry if this sounds silly

Hi,

Didnt want to tell family or friends about the feeling in my legs as it sound s pathetic and silly.

When im walking my legs are really heavy, i feel like im stomping about and my feet are touching the floor without my say so if you know what i mean. I guess iv become heavy footed.

Can anyone relate to this?

Thanks Christine

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That’s what I call normal. Sorry, it’s just another symptom .

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Yep I relate to that, but if you don’t tell your family and friends they won’t know. They can’t help you if they are not in on the secret.

Don

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Thanks…it makes such a difference to me that you knew what i was describing.

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I often feel as if my legs are no longer mine to control. I’m extremely clumsy and although I’ll see an object on the floor, I’ll plan my steps so I either step over or around it, some naughty goblin will either move it, or my foot and I’ll either stand on or trip over it. Sound familiar??

My legs also feel really heavy and my knees will just give in from beneath me, my gait is definitely not sexy and my ability to concentrate on anything but my movements while walking makes my legs forget how to keep up the pattern and get all tangled up ending in a fall. Any elegance I once had (and I got 94% on my modelling diploma a lifetime ago) has vanished.

Oh the joys of ms. At least my stick or crutches help prevent much embarrassment. You’re not the only one, though I know that’s no help. It’s very hard to explain, but you should try to describe it to friends and family, especially those you tend to walk with so they’ll understand why you have to concentrate while walking. The alternative - them thinking you’re being rude is much worse.

Hope that helps even a little bit.

Cath x

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Heavy legs, pain and a feeling of pressure in my feet and fatigue it really is turning into a very bad start to the year. I don’t suppose it helps that I’m piling on the weight and my eldest daughter is in a bit of a pickle.

Mags xx

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Thanks everyone for your replies.

I will mention these symptoms to neuro at appointment tomorrow. Im still having tests for ms bit what ever is happening with me has increased in last few weeks.

Feeling bogged down with appointments, not just for ms but others like endo, opticians, bowel specialist and more…

Maybe it will become clearer soon as to what the is.

Many thanks for all your comments and support.

Christine

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All the best for tomorrow Christine, let us know how it goes.

Pam x

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Good luck with the appointment, XXX Don

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PS nothing ever sounds silly on this board. We are all in the same boat trying to make sense of this wonderful condition.

Ask anything no matter what anytime. We are here for supporting each other

A burden shared and all that crap

Hope you get on Okay

Don

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Hi, my very first symptom was a very heavy left leg. It came on slowly then never went away! It felt as if was dragging a lump of wood around! This was followed by foot drop…causing a lot of stumbles and falls.

My condition isnt PPMS although it is very similar. So I understand your feelings of your legs not belonging to you.

Good luck with your appointment.

pollx

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My right leg is so very heavy, to the point it feels like my right foot has a magnetism with the floor. It’s one of the most common reasons I fall - I step ok with left foot, I assume my right foot will mirror…and it doesn’t even budge!

It’s generally not bad in the morning but it will go downhill and it’s the times I don’t see it coming when I fall

Good luck with your appointment

Sonia x

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Hi everyone,

Had my neuro appointment yesterday and i went into meltdown. Basically i didnt discuss any of me new symptoms with him. Neuro had decided that findings on mri were not significant even though the report indicated some significant findings.

I was sitting there with my daughter hardly able to speak because i was feeling very emotional and close to tears.All these months and months of tests and appointments have caught up with me. My daughter is out of her depth but very supportive and its not fair on her that im so needy at the moment.

He said he could arrange second opinion which i am going to think about.

Im angry at myself for being so sensative to everything and everyone, no matter what i said to me i think they having a go at me.

Got eye testing tomorrow and then i feel i need some space before any more tests are carried out.

I was fine when i was sat in the hospital waiting room and then bang the barriers were up with this overwhelming vulnerable feeling that took over me.

If anyone has any ideas of what i can do next please let me know your thoughts.

Thanks Christine

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Hello Christine, just to say i feel for you, i’m still in limbo and have been made to feel as if i’m an idiot on a number of occasions,…I’ve felt worthless, vulnerable and hopelessly stuck and then i find myself wondering is it all in ,my head??..Hang on in there its a horrible place to be this limbo land, you are not going mad. Two and a half years on i’m still looking for answers i was very fit and able and now have to rely on a wheelchair to go out anywhere. Sometimes i think if they don’t have the answers they don’t like admitting it. Also as they say only time will tell… so for now i’m just getting on with it best as i can. Last year i did ask for a second opinion out of area, i still haven’t got any answers except this Neurologist hasn’t told me it all in my head, he said that he would review my mri scans. I’m a lot better than i was emotionally, having a supportive husband helps and also CBT, they suggested that it would help and it has…it hasn’t cured me but helped me accept my disability and come to terms with my losses and also face up to the fact that i may never get a diagnosis.

Michelle x

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Christine I’m sorry to hear how upset you are, but dry those tears and take a deep breath. We all go into meltdown at times and being in limbo is very stressful. Once you’ve had time to process everything the Neuro said, and things you wanted to ask make an appointment with your gp. In a week or two he/she will have had the report from the Neuro and be able to answer at least some of your questions and possibly even contact the Neuro to clear things a bit.

You’ll probably feel more comfortable with the gp, some of them have better inter personal skills than some consultants. Write lists so you don’t forget things in the meantime and take someone with you who can remain calm and listen so you can discuss things with them later.

Just don’t beat yourself up. The majority of us have lived in limbo for a long while too, so can relate to how you’re feeling. Be kind to yourself, take a day or two away from work and chores and do something you enjoy rather than have to do.

Take care.

Cath x

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Hi

yeah I joined the “ministry of funny walks” 2 years ago and it’s getting less funny for me and more hilarious for others!

But I keep telling myself I’m not in a wheelchair yet so I should be thankful!

MrWobbly

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My legs deserted me 33yrs ago - since then l have someone elses - that’s what they feel like - and not even a matching pair.

Started a fitness class beginning of Jan. A stretch and flex session followed by a Tai Chi. l did explain to the instructor - before joining how l am ‘fixed’. So l do what l can - with the help of my rollator - and a chair to help get me back off the floor. l actually manage a lot more then l thought l would - so far - so good. l actually feel like calling out when l complete an exercise - l feel like shouting ‘look at me- l am doing it’ -

The stretch and flex is Pilates based - so very beneficial. And l have always fancied doing Tai Chi - seeing films of all those very elderly but supple chinese doing it.

Thankfully - l do not need to pay up front - you just pay each time you attend. And for 2 classes it is ÂŁ5-50.

So my ‘odd’ - and certainly not my legs are behaving themselves a bit better. Have also been massaging magnesium oil into the joints - which has helped.

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Hi shellyonthebeach,

I think you really do understand how im feeling. All the words you use describe my feelings so well. Its good to know im not going mad or even bad as thats how i feel.Sometimes i feel am i asking too much of specialists and why do i find fault with them. Then i have to remind myself that NO im not expecting too much of them, i can fully understand if they cant find a reason for my symptoms but i do expect respect and to be treated as human being, i treat people with respect and dont judge. I am finding this whole process is one of being judged when profiles are written by specialists that are in no way a reflection of what i am presenting with or what i am saying.

Can i ask you if you are any nearer to a diagnosis and if you yourself have any ideas as to what your symptoms might be.

Yes cbt maybe an option for me i just need to catch my breath and recover from my endless appointments.

Thanks Christine

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Hi Cath,

Yes good advice i do intend to stand still for a while and take stock. Just had my optician appointment and no obvious problems and my retina is fine, which was my main concern. She suggested gp makes referral for more specialists tests.She did mention that migraine can cause both numbness and eye problems, maybe they can but iv had migraines on and off since i was 12 and never had these symptoms before .Not sure what i would have done without the support from this site.

Thanks Christine

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Hang on in their Christine. Limbo is hell. We’ve all been there and we all know.

Neuro’s have terrible people skills. I once said that to my GP and she said well they’re scientists. They’re not in it to deal with people. They’re in it for the love of the science. I wish I had said to her that some neuro’s love the science AND the people skills and they should be taught the people skills when they train (they are on Grey’s Anatomy lol).

I think when you’ve recovered from this you should ask for a second opinion, and when you see that neuro you should ask for a lumbar puncture. That’s how I got diagnosed even though they were saying ‘it’s unlikely to be MS’.

If I ever saw the neuro who said that on the street I think I would run her over with my mobility scooter! (Yes it was a HER…arrogant & unfriendly as she was).

Stay strong,

Pat xx

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