Forum

Do you just put up with it?

I’m currently waiting a second opinion by a neurology Prof which is on July 9th - this was arranged by my neurologist who isn’t sure what’s going on and is seeking the help of a colleague with more knowledge.

My left leg is becoming a b*gger and keeps buckling beneath me. When in limboland awaiting an appointment do you just have to basically put up with this? I’m so embarrassed with it happening in waitrose and school, I want the ground to eat me up!!

Not sure docs will do anything though - what’s the advice? (apart from a stick!!)

Thanks xx

hi

i have had to use a shopping trolley one of the square ones that you push in front of you, it means i dont have to carry bags (because i cant) and ive got something to lean on and hold onto if i trip. its a godsend to me and i wouldnt be without it and i dont get any strange looks by using it (im 49) it is quite grannyish but no one has ever asked my why i was using it but then i went out last week and had nothing to carry so didnt take it but used my stick instead and by the time i had got to the end of the road two people asked me what was wrong with me. i was embaressed because they had seen me countless times with the trolley but just asumed it was just for shopping.

so yes, it is just getting on with it, or it has been for me but it does get easier.

the doc can help with pain etc but it really needs to be discussed with your neuro.

ive been in limbo for a few years so i just accept it now and dont hope for anything.

best wishes

mandy xxx

Apart from a stick, I can’t think of any. A hiking pole with a rubber ferrule stuck on the end is much less old lady than an old lady type stick. But if you’re falling over, that ground comes up awfully fast. Whatever else might be the matter with you, a nasty injury from falling is not what you want at the moment.

When you get the nosy parkers, just say airily, ‘Oh, my leg isn’t working so well at the moment, so I’m using this for now. And how is dear little Percy? Is his Probation Officer still pleased with his progress?’ Or whatever. Delete/replace as appropriate.

Then stick your nose in the air. Your walking is no one’s business but yours.

Alison

x

Here, here, don’t worry about a stick, I walked like I was drunk for ages and my friend gave me a brown paper bag with and empty bottle of coke in to carry with me!! I chickened out of carrying the bag but it made me laugh!

There are things like a hinged ski knee brace. I dont know how effective they are but I think there is a problem if relied on too much in that it could eventually weaken the muscles.

oh god it all sounds so serious! Thanks for your responses - pretending to be a drunk is the most appealing, that made me chuckle.

I think I haven’t come to any acceptance at all that I might ever have anything other than a full working body. I keep thinking it will all go away tomorrow

Hilarious!!! :smiley:

I had to use a stick at the beginning of my episode and still do on days when my leg feels weak. I got an old fogie wooden walking stick from my local charity shop. Then I remembered I had a hiking pole in the airing cupboard which is much nicer to use as it has a better handle. More comfortable. I am only 40 but I don’t care what anyone thinks. I am more concerned for my saftey. Plus a stick has it’s advantages: I get waved across the road and have doors opened for me now :slight_smile:

Actually. I even got chatted up in the shop yesterday…even with my stick! lol

LOL!!!

Kx

Thank you - I think I might try one of these to see if it stops the buckling which seems to come from just below and/or maybe above the knee. Having stayed quite chirpy this is what will depress me

Hi

Simple answer YES you have to put up with it, After many months got physio I was walking with a stick staggering looked drunk this physio came with cruthes to freee hands and brought a mat and doing palate dont know how to spell it sorry but she has given me some hope after 3 years my pain maybe improved its a long slow struggle I am afraid one neuro says thinks MS the other think arthritis I do not even care any more, best of luck.

Take care

Jan

x

Hi, when I have a particular problem and accept that I do have to put up with it, I study to find a better way of dealing with whatever it is.

This could mean doing as you have ie ask others in the know

or

see if any of the bodies such as physios, OTs, continence service, MS nurse, can offer a solution or suggestion to make it easier.

or

I look at what might be available from suppliers of disability aids on ebay or in catalogues.

Like you, I am awaiting an appointment with an MS specialist, for yet another opinion.

Over the past 14 yrs, i`ve seen 13 neuros! Their verdicts on me range from;

dont know what it is, but it wont get better…eh?

or

it is PPMS,

no it`s HSP,

no it`s PPMS,

no, it is HSP

it is SP…cause unknown.

Some folk think a label isn`t necessary, but it is to me. I want to know what has put me in a wheelchair, being hoisted and toileted, needing to take a cocktail of 15 tablets a day etc.

We all deserve an answer!

Good luck with your appointment, but if you like, why not ask if it can be brought forward. Or tell them you would be willing to accept an appointment at short notice, should they get a cancellation?

luv POllx