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So, the physio update...

Just got home, after getting myself in such a state I was sick before setting off. :frowning:

Mixed news, really.

As suspected, she WON’T raise or switch the medication. She didn’t think my feet felt all that stiff (not surprising, really, as I’d taken every muscle relaxant in the house, including baclofen and double dose of diazepam - for the anxiety).

She thought it would have been better to see what it was like untreated. Well, I did wonder that, but they could have said so, couldn’t they?

I got told off for not doing my stretches - of course. I told her I already do them several times a week, and how far I walk, but she said: “No, it’s EVERY time you pass the bottom of the stairs”. Can’t see myself keeping up with that very long - or at all!

But we’re also going to try orthotics. She thinks it might not be spasticity at all, but that there’s something structurally wrong with my feet. (Hmmm, so why did Baclofen ever help, then, if it’s not spasticity?)

So it was either wait another month, or she had a cancellation at the orthotics clinic tomorrow.

She asked if it would be too anxiety-provoking to go back two days running, but I thought probably better that than have another whole month to worry. So I said I’d take the cancellation.

On the transport side, it all worked out well, as the volunteer driver turned up on time, didn’t get all snotty when it was obvious I could walk, and only charged me £2.50 return, when I’d been told it would be £4.70! I gave him £3 anyway, and thought it was still a bargain (bus probably would have been more than £2, and wouldn’t have been door-to-door, and I probably would have been standing in the cold for ages, and panicking in case it didn’t turn up).

Better still, the driver has agreed to do the run again tomorrow. We tried to book it through the proper channels, but they said: “It’s far too late now: all the worksheets have already gone out!”

I said: “Well, I’m not doing it on purpose, the hospital have only just asked if I can come back tomorrow!”

My driver said: “Their loss: just because they can’t do it, doesn’t mean to say I can’t.”

He said he is still insured, whether it goes through their books or not, so he’d pick me up tomorrow. It’s also convenient for him, because he does other volunteer work, tending the garden at the hospital. So whilst I was in the appointment, he wasn’t bored, but visiting the garden! Win-win.

I asked: “Won’t they get snotty if they find out you accepted work privately?”

He said: “I don’t care if they do or not! We gave them the chance; they said no! If they’re saying they can’t do it because the right bit of paper wasn’t in place by the right time, that’s their problem. We played fair, and gave them first crack, so they can’t complain if somebody else does it!”

I fully agree with all that. If the charity is saying they couldn’t possibly arrange anything at that short notice, but their driver is saying: “It’s perfectly fine by me!”, I don’t see why he shouldn’t go ahead.

So tomorrow, I will have private transport, NOT booked through the charity.

Also it was really interesting that he took half the time the taxi usually takes, so clearly I’ve been scammed all these years, and they were deliberately taking the longest route possible, to bump up the fare.

Tina

x

Hi Tina, well I’m glad it worked out ok’ish. The ‘structurely wrong with your feet’ bit sounds very iffy. Surely you would have been born like that? Anyway at least you went and you can pat yourself on the back for that.

Taxi driver sounds very nice!

Good luck with the orthotics clinic. What is that exactly?

Hope you have a relaxing evening now…

Pat x

Hi Pat,

Well, it has been mentioned before, in passing, by an ultrasound operator, that there was a “structural abnormality” that could be causing pain. This was years before Dx, when I’d already been having pains.

However, he was not really qualified to interpret - just said it looked suspect to him. Yet when I saw the formal report, it made no mention whatsoever, and said everything was hunky dory, so I guessed that when the specialist reviewed the pictures, he felt there was nothing untoward, notwithstanding what the radiographer had said. You have to go by the official report, don’t you, and not what the operator tipped you off about? So I don’t doubt he saw something he considered unusual, but his superiors must have ruled it out as being of clinical significance, otherwise it would have featured in their report, surely?

So I’m left in the dark about exactly what he did see, and whether it matters or not.

I think the orthotics clinic may involve having some sort of cast made of my feet (Wax? Plaster of Paris?) so they can custom-make insoles, just for me.

Tina

x

When I had insoles made I had to push my feet in to foam, just like the oasis that’s used for flower arrangements - except it was pink

or maybe they want you on the walk of fame? like hollywood?

but on serious side - well done you for attending today and also for finding an amazing driver!

i had casts made by the podiatrist who then made me insoles to stop my drop foot.

the casts were made of something like plasticene or play doh - not at all hollywood!

carole x

LoL, that sounds not quite as messy as plaster of Paris. I was imagining having my feet in a lot of gunk tomorrow.

Have your insoles helped, by the way? And were they for MS-related problems, or unconnected?

Tina

x

Haha, LoL @ Hollywood, Carole.

No, I don’t think they’ll be wanting to keep my footprints for posterity, or auction them off for charity, alas.

T.

x

I suffer with drop foot and my left foot doesn’t seem to go down flat, the insoles do help, I find that my knee is less painful. I guess that if your feet don’t go down properly it can effect the whole leg.

The only trouble is they don’t fit in all my shoes so sometimes its a toss up do I wear the shoes without the insoles to look nice or do I wear the shoes that I can actually walk in. Next time I get new shoes/trainers I’ll make sure that they can take the insoles before I buy.

Hmmm. At the moment, I can only wear walking boots or trainers anyway, so no idea what I shall do if I ever need to go anywhere smart. I can hardly wear a dress or skirt any more, or even a smart business suit, because all of them look just awful with walking boots.

Been told to take along the shoes tomorrow, so I guess the candidate will be the walking shoes I always wear. Wondering whether to take the trainers as well, or even my business shoes, but I don’t think the NHS is going to be generous enough to fund umpteen pairs of orthotics, for different occasions, so I guess I’ll have to stick with the ones I wear most often.

Tina

x

Hi Anitra,

What a palava with the taxi, but glad you got it sorted. You dont need stress like that.

Orthotics helped my drop foot. Gave me a toe off leg brace that I can wear with jeans and trainers (not in smart work shoes until I can find some.) It stops me tripping over.

Hope your appointment goes ok.

Jen x

Sorry to hear it was not a very successful trip for you. Hope you have better luck tomorrow, at least now you have found a friendly driver, maybe worth asking of a way to contact him directly (email)? Could make the transport situation easier in the future? Laura x

I’m not sure if it was successful or not.

I suppose I have to try something, because this uncontrolled pain is really getting me down, but I’m a bit concerned she thinks it might not be spasticity. I’m pretty sure it’s not nerve pain either, because it does respond to muscle-relaxants and conventional (non-neuropathic) painkillers. Just not well enough or for long enough, at the moment.

I told her I’d taken everything in the house this morning, but although it took the edge off, I was still getting a dull ache, with nothing stronger to throw at it.

I know they’re there to help me, but I feel the worst I’ve felt in ages tonight. I keep trying to tell myself it’s just because I’ve let myself get stupidly stressed, and also missed my regular afternoon nap, because I was due at the hospital instead. These things by themselves are probably enough to leave me feeling rough, but I feel I should have come home from the hospital feeling positive, and not worse than ever.

If it turns out it isn’t spasticity, but “something wrong with my feet” (possibly incidental to MS), I wonder what my chances are of it ever being fixed successfully, or whether it’s just something I’ll have to live with all my life. It’s not an excruciatng pain - I don’t want to overplay it. But your feet take such a battering every day. If they hurt, you tend to feel miserable in general, even if most other things are OK. Very hard to feel cheery and positive, with constantly painful feet.

They’re not stopping me walking anywhere, but they’re stopping me from enjoying it properly.

A walk goes something like: “Sun is shining…FEET!” “Birds are singing…FEET!”

Tina

x

I expect the stress of it all and the missed nap this afternoon have not helped. It defiantly needs sorting and I’m no expert but I’m sure there is something that can be done to help, see how things go tomorrow. Maybe you will come home from that appointment feeling more positive, will keep my fingers crossed for you. Laura x

They made me two pairs of insoles, not sure if thats the same everywhere though. I think you should go wearing the boots and take the trainers with you too, you never know they might fit them into both for you.

Yeah, thanks Floopy, I’ll take both lots along, just in case they will do it. I’m a bit worried that I haven’t any lighter footwear for Summer (should we ever get one this year).

You cannot go literally everywhere in walking boots! My trainers are slightly lighter, and have a more summery appearance - being white - but they’re still quite sweaty and clodhopping if we ever get a real heatwave. I can’t remember when I ever last wore a summer sandal, and can’t remember when I last wore floaty summer skirts or dresses, because they always end up having to be teamed with trainers, or worse still, the boots! Basically it means I only ever wear jeans and a jumper or T, no matter what it’s doing out!

Tina

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I’m just the same Tina, I can’t keep flip flop type things on my feet at all, sandals have to strap on firmly and then I’m worried that I’ll drag my foot and scrape my toes - as for heels I can’t even stand in them nevermind walk! I have been going through all my clothes and shoes putting them in charity bags as I’m sure I’ll never get to wear them again. I have replaced them with some black trousers for when I have to be smart and mostly live in jeans and tracksuit bottoms with t shirts or sweat shirts - I can’t manage buttons or fiddly fastenings anymore as my hands are too numb.

Chris