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Ms specialist letter to my dr !!

I was looking into my medical notes and came across a letter sent to my dr when she asked him for a referel as i was not well at all.I could not believe the letter he sent to her in it he said i was showing hardly any signs of MS and that it was very benign and my lack of mobility was a surprise to him !!!he said all he could find in my notes was that i had a bit of tingleing!!!

I was diagnosed in 1992 after i was rushed into hospital for tests,they thought it might be a stroke or a brain tumour,i am pleased to say it was not.My symptoms back then were many including double vision,severe vertigo,swallowing problems.i couldnt stand unaided for weeks about 8 i think,i was completely numb all down my left side for months.i then went on to have many relapses some worse than others,some leaving me unable to do less and less.My old neuro,who sadly retired diagnosed me with secondary progressive in 2009 i agreed with him as by this time i was unable to do much at all.

I was given this neuro now who is supposed to be an ms specialist like my old one who retired,i never liked him much at all as when i told him of how i felt he never really listened and blamed it on anything BUT ms so i decided to stop going for the yearly appts with him as i felt it a waste of time.After eading my notes i felt angry as to why my diagnosis was now benign MS and not secondary progressive like in 2009.

How the heck can you go from been secondary progressive to benign MS is beyond me.I am virtually housebound these days as the effort of having to even get dressed some days is too much and has been since 2009.How is this even possible? all this has come about because i was looking for proof of my MS in my medical notes,so i wrote to this neuro and asked him how it was possible and he sticks to it that i am benign,i told him i wont be seeing him again as i dont agree with him at all.I feel as if i am living a lie and what chance will i have when my DLA changes to PIP with a diagnosis of benign MS.I have spoken to a few that have had this happen,some have been told they have not go MS at all after been diagnosed for years.It makes me wonder just WHAT is going on here.

The PIP form will ask, as did the DLA questions as to how your illness affects you?

Can you dress unaided? Go to the toilet/ cook a meal/ walk unaided etc. If you answer these questions truthfully as on the WORST day - cuz they don’t recognise that MS varies! then the neuro letter should not matter.

Just get help filling in the form. Example: can you walk unaided 20 metres? i replied, is that indoors or outdoors? on the level, or uneven ground? is it icy or wet? is the light poor or is it dark? these are ALL factors that influence the answer so you REALLY have to think about it. I’d get help with filling it in.

I completely agree. You need some specialised help with the form. Try your local CAB, but you won’t be able to do that until you get the claim form. In the meantime, is there an MS nurse in your area? Could you get an appointment with him/her and ask for help with a letter spelling out, as reddivine said, your actual day to day symptoms. You could also contact your councils Social Services department and ask for a care assessment. This doesn’t mean that you have to be applying for Care, just for a social worker to visit and detail what actual care you need. Talk to them anyway. And you could get an appointment to see a physiotherapist, ask your GP or the MS nurse for a referral. They could also write you a letter particularly with regard to the distance you can walk. Sue

that’s a brilliant idea of Sue, getting a physio to look at the distance you can walk because it will be in the letter sent to your gp.

make sure you ask to be copied in to any letters.

this will still need to have the proviso of conditions, it is a lot different walking in a hospital to walking outside,

get help with the form and try not to get stressed.

if the worst happens and your benefit is reduced, appeal!

i never thought a tribunal would overturn the decision but they did!

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I got my lovely physio to write to me (to whom it may concern) so I side stepped the GP entirely. And did the same with my MS nurse. The GP won’t write a letter unless they are written to, plus they don’t understand the rules. So what I’ve always done is complete the form (and unless you really know what you’re doing get someone else to help with that) and then send my GP a shortened version of what is in the form (bullet points because they are busy!) as well as a short explanation of which points I am expecting to get. This is a ‘just in case’ the DWP write scenario. Plus, it helps educate the GP a bit. Both in terms of where I am with regard to mobility and care but also to teach them a little bit about PIP. I’ve done the same with ESA.

I don’t honestly know how all the medical professionals are supposed to learn the rules. I make sure I try to teach all of them I come into contact with, just a bit about disability benefits.

Sue

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Thanks for your replies i have decided not to even apply for the PIP when the form comes to transfer,i just dont have the energy,they can stick their PIP, if i had the energy i would fight my corner but i have a hell of a lot going on besides all this and compared to all thats going on PIP is the least of my worries and a stress i can well do without.I talked to my other half and he agrees with me,and hes relieved that i am not going to apply for it.Just talking on here about it wore me out,so god knows how i would feel having to try and prove it all.I know thats the reason they are making it so hard and i take my hat off to all of you that challange it but i just cant face it.

In the assessment it isn’t the label that counts but rather the state of things on the day.

The assessors will only note what they see at the actual examination - the notion that they take into account what things may be like on a bad day is wrong.

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Oh Mrs J, that’s terrible. The bastard (sorry mods and anyone else offended) DWP. It’s just not on that people who deserve it are so put off by the very thought of the worry and stress they just can’t put themselves through it.

It is possible to apply and just try not to worry about the result, along the lines of ‘well I’ll either get it or I won’t, whatever’!!

But I can see why you don’t want the worry.

You can always change your mind later and apply when you feel like you have the energy to spend on it.

Sue

Where are you on the disability scale?

When the Neurologist or GP or MS Nurse etc.,. assess you - they think in terms of this Expanded Disability Scale.

Have a careful read through the list - it might help to decide.

Fay

Now then MrsJ, dont give up like that, its no where near that bad. I had a lady from helped the aged come and help me fill in forms, I did nothing. The forms are so much easier then DLA. Its more or less A, B, or C.

Sounds to me you should get it with no issues. Its not about the disease anymore anyway, its about how your illness affects you.

this is brilliant and will show you what you have to do. the first thing now is make sure you get your gp on side and any other person dealing with you.

http://www.mybenefitsandwork.co.uk/pip/indexxx.php

The assessment is interested in who helps you with medication, can you wash yourself, dress etc, cook, and the mobility one can you plan a journey if you cant go out or drive then i would say NO you cant, you have to be taken everywhere if that is the case, as with myself. I cant go out on my own are you the same, if so say so. How far you can walk without pain or discomfort, well it hurts me as soon as i try to stand up.

Its really not that bad, and i got both enhanced. I take it you havent had your renewal form yet so dont make a decision yet, just calm down and get the groundwork in for when you do. xxxxxx

And perhaps you should think about taking the benefitsandwork.co.uk self test: Take the PIP test

If you were to do the self test completely honestly, and end up that you should be entitled to the enhanced rate for care and/or mobility, then you might want to think again when the form comes. Even if you basically have very little up to date evidence, and know from the outset that you’ll have to have a face to face assessment, you could decide that you’ll claim but not bother appealing if they turn you down. (Just don’t send them the crappy letter that says you’re benign and there’s not much wrong with you!)

I think it’s shocking that the people who most deserve the benefit can’t face the claim process because they’ve been diagnosed so long and are progressive so they have no evidence.

Sue

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HI Sue i did the self test for PIP on the benefitsandwork site and i scored enhanced on both and i know how to fill the forms in but what i am worried about is having no evidence as i dont go to see the neuro or MS anymore after i saw in my medical notes online that he said i now have benign MS instead of secondary progressive,i wrote and told him i didnt agree with him and wont be seeing him again ,so i dont have a neuro anymore.I am going to ask for a 2nd opinion with another neuro.I havent had an MRI since 1992 when i got diagnosed with that and a lumber puncture. J x

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I actually assumed that from what you’ve posted before, ie that you’d qualify for enhanced rates. That’s £140 a week. Or over 7 thousand pounds a year. I completely understand your conundrum. It’s a hell of a lot of stress and worry. In your shoes I’d be thinking about alternative sources of evidence, (as I said earlier) and putting in a claim regardless.

Even if you have to explain away your lack of written evidence with statements like this: ‘I have had MS for 25 years. I have the progressive form of the disease. This means I rarely see a medical professional because my physical condition, including my care and mobility needs, don’t tend to alter except very slowly for the worse. There are no treatments offered for progressive MS particularly when your disease is this long standing and my physical condition has been poor for many years. So I do not have reams of letters from neurologists or other medical professionals. If you need to verify my physical condition further than the limited evidence I have been able to send you, you will have to call me for a physical assessment. Since I will need considerable assistance to reach an assessment centre, could this take place in my home.?’

Does that help at all?

Sue

I think you have a good action plan.

With a new hospital - new doctor - and new MS Nurse you can put your NHS paperwork in order.

I’m sure they will want a new MRI to compare with the one from 1992 - this will indicate whether or not you have active MS lesions - and any increase in neuro damage and disability.

Good luck!

Fay