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Only mild disability?

Hello.

I have had a diagnoses for about six months and above all, the most frustrating thing about it is how it affects my mobility. My right leg is permanently stiff and weak all of the time. In addition I cannot walk for more than about 20-30 minutes flat out before my leg stops working and crumples beneath me. This is the same if I do any mild physical activity such as housework, light gardening, any form of exertion, and heat also brings it on.

My neurologist examined me the other day for about two minutes and said I have mild mobility problems; and he is right as all I was doing at the time was lying on a bed. However, when I have been active and the MS symptoms kick in, it feels far from mild when I can’t move my right leg another inch and I have to sit down and recover.

My question is, how can my mobility problems be labelled as mild when this isn’t a true interpretation of how I am on a daily basis? It’s so frustrating as my right leg can swing from being virtually normal to paralysis in less than an hour. Then, after a rest it’s back to normal again, and so on. It really is upsetting as I often feel a fraud.

hiya

dont get hung up on labels. my label probably is severe disability but does it matter cos we are all struggling in our own way. the labels make it easier for others-not us!

100% fab! thats a better label to use!

ellie x

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I like that Ellie, thank you x

Hi Jenefar

It’s all on a spectrum. He can’t tell from a neuro exam what you’re like after any exertion. All he can do is measure you at rest so to him it’s mild. Ignore his comment. Only you know what MS has cost you physically.

And for some of us, being able to walk for 20 minutes, regardless of the effect after, is unattainable.

But in no way does this make you a fraud. You have MS. It has had a big impact on your life and your mobility. That’s the fact of it. And one doctor saying it’s ‘mild’ shouldn’t make you feel bad for experiencing the problems you do.

Sue

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You and the neurologist are using different frames of reference, perhaps? My guess is that you are considering your abilities in relation to how you were before MS mugged you. He is considering your abilities in relation to some other standard that might include the population of his patients with MS, some of whom will need a carer or two to help them go to the toilet. Those are two very different ways of looking at disability, and they are both right in their way, but they are answering different questions.

Alison

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Thank you to the above, you’re so right. I really appreciate all that I can still do compared to some MS sufferers who can’t, and I realise the fact that I can walk is good news. I don’t want to insult any of those who have severe disability.

It’s hard to explain but I suppose the whole MS ‘on and off’ thing annoys me - one minute I can do what I want and think I’ve imagined it all, and then it kicks me in the leg. It’s the acute difference that baffles me, and when it’s acute, I can’t even walk up the stairs to use the loo. It’s a tormenting disease.

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That is a very, very good description.

Please do not think that you are not ‘allowed’ to feel as if MS has elbowed you in the solar plexus - it absolutely has, and your feelings are entirely justified in objective terms (as well as being automatically OK because feelings are feelings and need no permission). Your losses are real and painful, and the months post-dx do tend to be a difficult time in a person’s life. That transition from being perfectly well to having a chronic progressive disorder that isn’t going away is often a tough time, when fears and uncertainty about the future and anger at the unfairness etc are stirring up troubling emotions. Basically, it just sucks. I really feel for you.

Please do not for one single second feel bad about feeling bad because there are always people worse off then you. There are always people worse off than every one of us, except for one unlucky soul somewhere in the world, the Lord help him or her.

Alison

Your ms isn’t mild to you. It’s your life that’s affected, not his.

One neuro told me I should be very happy that the tests hadn’t picked up any problems.

Yet I still needed a wheelchair, wet myself and fell up the stairs!

Try not to dwell on his comments chuck!

Pollsx

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I recently received a copy of a letter from my neuro to my GP following my annual appointment. The letter gives the current state of my MS. Everything looked OK till I read my EDSS score - 4.0. According to the MS Trust website, 4.0 means “Significant disability but self-sufficient and up for some 12 hours a day.” The disability in this context refers to a variety of functional systems rather than mobility. So far it’s reasonable. The description continues “Able to walk without aid or rest for 500m.” No way is that true. I haven’t been able to walk without an aid for more than 12 years. Based on the descriptions, I’m 6.0: “Requires a walking aid - cane, crutch, etc. - to walk 100m with or without resting.” On a really bad day I’m 6.5 - Requires two walking aids to walk about 20m without resting."

I’m not sure what to do about this letter. The way it stands I have medical evidence on record that directly contradicts the evidence I included with my PIP application. It also doesn’t reflect my current state of health. I’ll phone my MS nurse tomorrow and I’ll see if I can get hold of my neuro’s secretary to query the letter. Any other suggestions?

Hi Cheery Dragon

Write to your neurologist and explain the problem. I had a letter from my neurologist which stated that I’m 6.5 to 7. The problem with that seemed to be the difference between PIP for mobility at the standard rate or the enhanced rate. And I know I can’t walk 20 metres, even leaning heavily on a walker and with FES. So I asked him to change the EDSS score to 7 in another letter. Which he did, and that was the letter I included in my PIP application. Subsequently he put in another letter some tosh about 6.5 to 7 again, but by that time the award was made. Hurrah.

If you’ve already submitted proof that you are 6 - 6.5 in your PIP application, or evidence supporting the walking you can actually do, I wouldn’t worry too much as the DWP are not likely to contact your neurologist. They are much more likely to contact your GP (if anyone and I think even that is a rarely). But, I would get the neuro to confirm where you actually are on the EDSS in writing, just in case you don’t get the award you think you should and need to request reconsideration or appeal. (That’s assuming you’ve not already had your PIP decision.)

The problem with neurologists is that they don’t see you walking. They may do a neurological exam, but that has no bearing on your walking ability. And of course they know nothing about PIP. So they can only report on what they think, or on what you make a point of telling them.

Sue

Thank you for your wise words, they made me feel better.

I suppose we all have our personal cross to bear, both physical and mental. My neurologist said what I have is residual damage so I am gutted that I’m stuck with this mobility hindrance and it isn’t going away. My fault I suppose for ignoring the problem pre-diagnoses for so long. I’ve always been a bit of an ostrich. I’m kind of fearful too of further relapses as far as mobility is concerned, seeing how I consider this first attack to have left me with significant damage. My ms nurse said it just depends where the lesions are. It feels like a time bomb.

Once again, thank you all for your thoughts and support.

Jenny

These medical people and their tests. It’s like sitting an exam to prove yourself.

What you said about one of the neuros you saw is almost laughable, and insulting. I’ve had a taste of three already during my short journey so far and only one made me feel confident of his opinion, and he wasn’t even a practising neurologist as such as he said he studies the disease in the laboratory and doesn’t see patients. The hospital was and is short staffed.

I suppose these neurologists are like the disease, each presents itself differently.

My neuro wrote that I looked well, was well dressed & I was managing well. Considering I have an army of carers & some pride, it was a tad condescending to put it mildly. Do they expect us to look like tramps & smell!!! Really. Tracey

My neuro did see me walking unaided - about 7 feet across the room from a chair to the bed. He also watched me walk heel-to-toe unaided for about 4 feet. He was hovering by my side for that one as I was in obvious danger of falling over. I used to walk a timed, measured 100m during my appointments, but that only told him my walking speed. It was timed by a nurse and the neuro didn’t actually see me walking.

You say that the DWP are more likely to contact my GP than the neuro. That’s part of the problem. The letter I received was a copy of one sent to my GP for their records. So it’s on record in two places that I can walk 500m.

PIP has been awarded at enhanced rate for both components till 2022, so you could say that I’ve got 5 years to get this sorted out. It’s just irritating that my neuro got it so badly wrong. But that’s the difference between 10-15 minutes with a neuro and at least 30 minutes with my MS nurse. It’s also why I asked my MS nurse to provide the medical evidence for my mandatory reconsideration. She helped me get the enhanced rates, bless her.

Don’t worry about it. There are bound to be about a hundred letters sent to your GP by the time rolls around for renewal of the award. And if they’re anything like my GPs, they don’t read the letters anyway.

At least you have already got your PIP award sorted.

Sue

We only look like tramps and smell on the morning after the night before when 15 large G&Ts were drunk.

Oops!

Sue x

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Mmmmm, yes well pointed out Sue ( good job I hadn’t had to go yesterday) xx