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The MS PEOPLE UK Forum
Support, help, advice and information for Multiple Sclerosis. Ask questions and share experiences with people affected by MS.

Spotlight

Inspiring or noteworthy topics from across the forum

DLA to PIP
Well, this morning's post brought the DWP letter I have been expecting for about two years! Yep, you've got it, would I like to apply for PIP as the DLA is ending. I feel like I might be the last person on the planet to get the letter, but probably not! Having sorted out the various requirements needed to make the initial call, and having referred to the members-only guides on the Benefits&Work site ...
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Talking to others about your MS
As some of you know, I have been writing and talking about my MS since I was diagnosed in 2007. One thing I was glad I did back then was tell people that I had MS. This is probably not something anyone should suggest or recommend to others just diagnosed. For myself, it turned out to be a good decision. It's a strange thing, when you tell most people they simply don't understand ...
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How We With MS Feel...
When we say we can't do something because we don't feel well, put yourself in our shoes by using the examples of our symptoms below...
 
Painful heavy legs: Apply tightly 20 lb ankle weights and 15 lb thigh weights, then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now? ...
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The Spoon Theory
Christine Miserandino wrote “The Spoon Theory” as a means of trying to describe to her best friend how it feels to be disabled and not as healthy as they are.

Although “The Spoon Theory” is about Lupus, it can apply to MS or any other such condition just as well.

You can read it in PDF format here ...
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Gumption Traps
Gumption’s great! Lots of folk have loads of it, some have none. It’s essential, it’s something money can’t buy and it’s immensely valuable. You don’t just automatically have this stuff. Gumption is like a reservoir. You start off with a little and by playing your cards right you may gain a little bit more. Once you are all topped up with gumption you can tick along quite nicely. ...
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Letter To Normals
Having MS means many things change, and a lot of them are invisible. Unlike AIDS and cancer, most people do not understand even a little about MS and its effects and, of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand... These are the things that I would like you to understand about me before you judge me...
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MRI Claustrophobia
I know people who actually enjoy having an MRI in spite of the noise. It makes them feel calm and serene like back in the womb. Nothing to do or think about except keeping still. Apparently it can be relaxing and soothing experience for some people. Not for me though.
 
MRIs can be a problem for some of us. I didn't mentally prepare myself for my first (and only) ...
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Positive things about a Primary Progressive MS Diagnosis
John (Heste) said: I too have PPMS. Personally I prefer it to RRMS as it means I don't have to take medicine every day or inject myself. I know that tomorrow I will have the same symptoms as I have today. It's consistent, I think this makes it far easier to manage.
 
There are plenty of positive things about a ...
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Diary of MS - Symptoms to diagnosis
I'm feeling quite tingly all over today
It's really quite nice in a strange sort of way
But then the numbness creeps in, the tingling goes
And all of a sudden I can't feel my toes
 
By mid-afternooon it has spread to my knees
Best go to the Doctor
''An appointment please'' ...
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Too Fat, Too Slow
With my weight I could do with being a lot taller. Alternatively I could just lose some weight. However, there are a few things that make this difficult.

Firstly I am Vegan. I already have a healthy diet. Secondly, since being DXed I have further restricted my diet to cut out saturated fats and various other things that are supposed to be bad for MS. Thirdly ...
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What difference does having a DX make?
What difference would having a definite dx make to those of you (like me) who are still without a definite dx (as tests etc are still inconclusive etc)? Or, what difference did it make to those of you who have had a definite dx? How does having a dx help (given that there is no cure) and what does it change? To what extent does it matter if one knows ... for sure or not? If it does matter, what makes it matter? ...
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Describing Multiple Sclerosis to people who don’t have MS
I read this recently and thought it describes MS in a really good way. If you owned a home and one day you noticed the kitchen light didn’t come on as quickly as normal, or would periodically flicker but, then one day it came on and was fine. Then two days later you noticed the living room light didn’t come on when you flipped the switch the first time ...
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Wheels
It sometimes feels like I am giving in to this condition but I am seriously thinking about getting myself some wheels. I got myself a scooter a while ago that lives in the boot of my car. Its great for when I visit supermarkets or go to places where there is a lot of walking to do. However, I have never felt comfortable about using a scooter to get into my office. It just doesn't seem like the right vehicle ...
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The Perils of Photography
So having given up archery and sold my bow I have taken up Photography. Friday lunchtime I thought I would take a slow limp along the south bank of the Thames with my Canon 450D. I parked in a disabled bay near the Tate Modern and walked upstream towards the London Eye. I was photographing various buildings, sea-gulls, strange blokes engaged in sand sculpture. Then I arrived at the London Eye ...
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Another way of looking at it: Old Shuck
Multiple Sclerosis is a complicated condition. A beast whose hidden elements can appear and disappear in an almost mythological fashion. Others never seem to properly comprehend or accept these hidden phantoms — yet, as sure as hell, those forms are fact. A clinical diagnosis is one aspect, yet it’s quite a different matter learning to live with such a ...
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Car Adaption
Today I tried out my first car adaption, a steering wheel control knob or steering ball or, it would seem, a suicide knob.

My left arm is getting ever weaker and I have found that, although it does still work, I tend to drive with it in my lap and only one hand on the wheel. This is clearly not just not good practice ...
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Taking medicines abroad
I try and go abroad at least once a year and, in the past, have given little consideration to just how I carry my drugs with me. We always used to take a pill box and set out the meds on a day-by-day schedule. One problem with this is that drugs should be carried in their original packaging. I've never had much of a problem but, more recently, realised I should be paying a bit more attention to the ...
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The Bionic Man
So yesterday I attended a hospital appointment to try out the FES (Functional Electrical Stimulator) for my foot drop.

They rolled up my trouser leg and applied two little sticky pads, one to my shin and one just below the side of my knee (the top of my fibular). These pads have wires going to a little box on my belt ...
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Describe Pain
My wife asked me what sort of leg pain I suffered from. It was a hard question to answer. How do you describe pain? I came up with an answer that I thought a listener might relate to. This is it:

I could just say its like my legs are bruised but...

Suppose someone was to whack you hard with a ...
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Things they don't tell you that you need to know
I thought I'd start a thread for all those things that we've had to learn by experience, to help those just being diagnosed. There's loads of info out there about the disease and symptoms themselves, but many of the "side issues" get missed until it's too late and they've reared their ugly heads. Perhaps if we make a list we can save others the grief! ...
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About Us

Founded in 2004, MS People UK is a non-profit website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.

If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.

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