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Difficulty walking

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ptlike

Haha Fran well I too used to be a biker. Now have grandson as pillion lol. He's very good but has habit of turning speed up lol. Watching Eddie Izard doing marathons so I guess I've burnt sugar off, so no regrets lol

Best wishes scooter girl

Peter

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Nindancer

I'm just coming up to 3 year anniversary of my diagnosis, so 3 yrs ago I could deadlift into that pose in my profile pic and now I own several walking sticks, a pair of crutches, a 3 & a 4 wheel walker & a chair. It seems to be hit & miss, some days are just better. Get physio if you can, on a really bad day at least it's a small consolation when stretches feel good :wink2:

Sonia x

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I'm just coming up to 3 year anniversary of my diagnosis, so 3 yrs ago I could deadlift into that pose in my profile pic and now I own several walking sticks, a pair of crutches, a 3 & a 4 wheel walker & a chair. It seems to be hit & miss, some days are just better. Get physio if you can, on a really bad day at least it's a small consolation when stretches feel good :wink2:

Sonia x

 

Thanks for your message Sonia : )

 

wow you were that fit just 3 years ago..it has crept up on you fast..I was very fit also but maybe more like 7 or 8 years ago..

 

I've been trying to get physio.. I only found out there is a nurse led MS clinic near me about 5 weeks ago and have been trying ever since to get an appointment..I rang for 3rd time yesterday..receptionist asked why I wanted an appointment...I said because I suffer bad leg pains..she said 'can't your GP give you anything?' I said I don't want medication I would like to try physio.. she said we have 400 people on our books so you'll have to join the waiting list. So the wait goes on and meanwhile I go out my mind with the pain.

 

Fran x

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Haha Fran well I too used to be a biker. Now have grandson as pillion lol. He's very good but has habit of turning speed up lol. Watching Eddie Izard doing marathons so I guess I've burnt sugar off, so no regrets lol

Best wishes scooter girl

Peter

 

Arrghh!! I don't like scooter girl : ( I used to be a biker too ya know : P

 

Hmmm I'm just wondering what I can do to burn off the 3 'Timeout' fingers I've just eaten :-/

 

Wow Eddie Izard was awesome wasn't he!!

 

Hope you have a good weekend : )

 

Fran

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Nindancer

Ah, now I have seen a Neurological Rehabilitation consultant, he's really good for all the mobility stuff. See if this is something you could get referred to, mine has helped me a lot. He referred me to London when I expressed a willingness to take part in trials etc.

Sonia x

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jayjill

Hello Fran

I see you're taking magnesium tablets which I've been having too - supposed to be needed with calcium and to help with spasms I've been getting in my weaker leg. But I was finding the runs tiresome and I still had spasms, so I looked round the web and on Fri sent off for some magnesium spray. Well, it came yesterday and I've just started to use it. Can't say yet if it's beneficial but hopefully....will have a better idea when I try it before doing 10 mins or so on exercise bike.

Jill

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Nindancer

Jill, I have Magnesium spray and it's good... even better if someone can briefly rub it in, mini massage on my legs is perfect!

Sonia x

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jayjill

What a good idea Sonia! :wink2: I'll enlist some help. Jill x

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Hi,

 

firstly thank you to everybody who replied to my post : )

 

I've seen an MS nurse twice since I posted this..and got nowhere really..she promised me physio but it's never materialised..not even a letter with an appointment for the distant future..anyway my walking's got so bad I thought I'm going to see if GP can get me any help (never get to see neuro) I said to her my walkings getting so bad...I can barely shuffle along and can only get a few yards before I'm needing a wheelchair..or a seat of some kind..she said what treatment are you on? I said..treatment? none :-/ she said..you are kidding me!! I said no...never had any treatment in all 13 years since onset.. she was stunned..she said I am SO sorry...you have been so badly let down...somehow you've slipped thru the net..I'll arrange some physio for you....so that was it....see if I get any physio now....and d'you know what..while I'm at it...when I was first diagnosed...well when they decided to tell me (I was diagnosed on paper 4 years before they actually verbally told me)...at that time my neuro said I'm afraid we don't have an MS nurse in your area....I went home looked on net and I found out actually yes I do!!

 

Anyway thanks for listening guys..it does help to talk (vent) to people who truly understand : )

 

Fran xx

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Nindancer

Fran, that's so rotten :shutup: It really makes you wonder how people ever coped with this rotten MonSter before the internet!

A lot has changed in the last couple of years, even down to how often you're seen by a neuro. I'm glad your GP is onside tho.

I have had a couple of physio appointments but to be honest, the last couple of times I've been to the MS therapy centre closest as you can phone and make an appointment. The physio at the hospital was good but you could wait ages for an appointment.

Sonia x

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Thanks so much for that Sonia : ) I'd never heard of a MS therapy centre before..I googled it and found there is one fairly close to where I live..why didn't any of the health professionals ever tell me about MS therapy centres?? thanks to you I have a lot of hope now : ))

 

Fran xx

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Nick

Hi Fran,

 

You are not alone in having problems in identifying where your local services for MS are, nor how to access them. Something that the MS Trust and MS Society have long been working on. In fact this link shows what is supposed to happen, https://www.nice.org.uk/guidance/cg186/chapter/1-recommendations

It might also be worth getting back in touch with the MS Nurse who is part of the 'system' I have been lucky in that nearly all my help comes by having a close relation with the MS Nurse. Unfortunately I do understand that neurological services differ widely across the UK. You do seem to now be getting help via your GP which is great!............mine is far to busy to pay much attention. Keep pushing and do go along to your local MS Society group, it is amazing the help you will get from other people in the same position.

 

Nick

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Just another Warrior...........

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Hi Nick : )

 

thanks for your reply and the link showing what's supposed to happen..that was interesting! I seem to have got as far as 1.1 on the list lol..

About 4 months ago I finally after much pestering managed to get and appointment with an MS nurse..she made a lot of notes but offered no real help at all.. she said she was going to refer me here there and everywhere but I've not heard anything from any of them..I saw her for 2nd time last week...she just repeated everything she said first time I saw her..I will refer you to pain clinic, physio etc etc..she asked if I needed another appointment...silly me thought I would see her regularly for good now..seems like my next appointment will probably have to be my last by the sound of things..at least I have my locum GP on board but how long she will be around I don't know..I will go to the MS therapy center see what thats like..I have a feeling they will be better than any NHS service : )

 

Have a good weekend : )

 

Fran


Edited by Softsqueezy

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ptlike

Hi fran, so like me the Olympics will have to wait lol. Hope you get help soon

Best wishes

Peter

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Hi Peter : )

 

as a result of going to my GP for help recently...I now have an appointment with the Orthopeadic CATS service..see how that goes..

 

Hope things are ok with you...I noticed you'd not been on here for some time..

 

Best wishes

 

Fran

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Hi Fran and Jill I wondered how you square rock chicks and scooter lol. Believe me Fran being male and having basket on front of scooter is not a cool image lol. I just don't care anymore, age thing I guess, Easter's great especially the chocolate lol I convince myself it's good for me ha. Hope Easter's being good for you.

 

Best wishes

Peter

 

Hi Peter,

 

just looking back at past posts and found this..just had an idea..I'm going to stick AC/DC and Rammstein stickers on my scooter! I have them on my wheelchair already..but yeah scooter too!! :wicked:

 

Scooter girl ; )

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ptlike

Hi Fran (scooter girl)

Health wise same as but some family issues. Heard of CATs a musical isn't it. Not rock chick music I bet, but hope it is a sucess. A plan with the stickers but I'd like a roaring like a large bike when setting off and a beast of a horn.

Try attaching CD to seat and blast the music lol.

Best wishes and parkers are good in the rain lol

Peter

 


Edited by ptlike

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