Feeling so down

Everyday living
1

Hi,

Got my first ms clinic appointment tomorrow after being diagnosed with ppms a month ago. Im feeling so angry at the number of consultants i saw who failed to recognise what was wrong with me. This led to diagnosis of M.E. fibro and all in the head even though they did not say that in so many ways.

Now im in a battle with PIP or should i say ATOS, i dont know how to express myself and this old familur feeling of not being believed is present.My oldself would have faced these problems head on, but now i dont have the words or energy to say what i think or feel. All that comes out is tears and words that mean nothing. I dont know how to fight back, how to regain some of me or even how to behave.

I needed to share this with people who understand.

Thanks Christine

2

Hi christine

i totally understand how your diagnosis has knocked you for six.

however i know that there is still your old self in there and you will cope with ms.

now coping with ATOS is another thing.

have you joined benefits and work site?

they give you all the information you need to complete the forms.

get someone to represent you, CAB maybe?

someone will be along soon who will correct my mistakes (i make a lot these days) and give you up to date advice on PIP.

of all the things that ms robs you of, it’s your self identity that offends most.

you are still you.

be strong

carole x

3

I am so sorry you feel like this. My local authority, Croydon, is sending someone round to help me fill the forms out. Maybe this could be offered to you from you LA? I really hope things work out for you and am sure you will get loads of advice and support from the great people on the is forum. They have helped me over the past six months.

Trev

4

Hi Christine

I am so sorry you’ve had this long journey to an unpleasant diagnosis. With regards to DWP, Atos etc, I echo what others have said. Have a look at Sick or disabled people and carers - Citizens Advice and/or http://www.benefitsandwork.co.uk/ if you haven’t already. I urge everyone in this situation to join benefits and work. It costs about £20 but it’s well worth it for the guides to filling in forms, assessments, reconsiderations and appeals. Their information is up to date and correct.

Also, as Trev has said, approach your local council (County as well as Borough or District). See if they have a welfare rights service. And of course the CAB may be able to help you with forms and representation.

I do understand your anger at having been misdiagnosed previously, but MS is a pesky so and so. In some people it’s very hard to diagnose. I suspect that a PPMS diagnosis is actually harder to diagnose than the more common RR. It does seem that many people have a very hard route to diagnosis and that’s a very tough thing to take.

Best of luck with the clinic and with the benefits.

Sue

1 Like
5

Thanks Carole,

Yes iv joined benefits and work,im going to try and get things together to go for a reconsideration. Its a struggle at the moment due to extreme fatigue and no motivation for anything. Got a couple of numbers who might be able to offer me support so will give them a go.

Had appointment yesterday at to see rehabilitation doctor but no ms nurse as im out of the area for an ms nurse at the hospital i went to.

Thanks Christine

6

Thanks trev,

Yes i agree with you that this site is full of people with understanding and knowledge, dont know what i would do without it.

Dont have a lot of faith in my LA but contacted local mp who is coming to se me later this week.

Thanks Christine

7

Thanks Sue,

Yes i joined benefits and work and working my way through it. Clinic ok yesterday but no ms nurse as yet. Im going to be referred to neuropyscology which may help with my diagnosis and some of my feelings towards it.Also been referred to urology for my bladder problems. So yes slowly making progress, only 5 weeks ago i did not have this diagnosis which did bring me some relief after years

Thanks Christine