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Hi, my name is Amy and I am 29. I am very newly diagnosed with MS. It came on out of the blue last week and after 2 MRI’s and lots of tests I have several lesions on my spine and brain aswell as some neurological problems and just now I have a numb right leg and having lts of difficulty walking. I have been given steroids and crutches for now and will be given more long term information w phenomenon I attend the neurological clinic some time soon. I have a million questions,a lot of which I have found answers for on this site but one main question I have is regards to what benefits I can claim if any? I have a 2yo boy who has cerebral palsy and I’m his main carer which right now is proving very difficult. I’m so tired and struggling to walk about. My husband works full tie but has managed to get emergency leave for now but we can’t have him off work any longer as we rely on his wage for all our bills. He doesn’t get any pay at all whilst not working. Can he stop work and claim anything to help me or can I get help from anywhere else? The way I feel today there is no way I could possibly look after my disabled toddler everyday and get my little girl to and from school on my own,it’s impossible and we have no one else. Any help would be greatfully received. Thanks Amy

w phenomenon = when. Stupid ipad!

Hi Amy

Welcome! Sorry to hear you are struggling. I cannot anser with regard to the benefits but I think that local MS groups have a contact with a benefits advisor, I know ours does and we can book appointments. Friends say they have been really helpful.

There will be people on here who have perhaps done this and can give you more information. I did get some advice from my local remploy office, but that was mainly help with working situations etc.

Hope things improve for you soon. I know how difficult it can be with a toddler, I was just going through diagnosis when my little girl was this age, with any added difficulties.

Take care

Helen

x

Hi Amy & welcome, sorry to hear you’re struggling, that must be terrible having to go thru all this yourself and having a disabled toddler to care for. I would think the first thing you should do is to phone your local welfare rights office, probably in your local council house but there should be a phone number on the website. Just google welfare rights in your area, they are usually very helpful and will be able to tell you exactly what benefits you may be entitled to and point you in the right direction. They should be able to tell you all this over the phone providing you have all you & your husband’s details to hand. Hope this helps, take care, Kate xx

Hi Amy, Just wanted to say welcome to the site. Sorry can’t be anymore help with benefits. Barney

Hi Amy,

Can help a little but not sure how much help i can be. Firstlysorry to hear about your diagnosis, but welcome to the site!

You can claim disability (now pip) benefits, especially if you having trouble with walking, getting about, dressing and caring for yourself. Also they dont care what your income is as its not income based. So phone your DLA office/local benefits office and they will help you with the paperwork necessary.

Also you said that you have a 2yr old with CP…surely you can get carers allowance to help with him/her. This will also give you that bit extra to take them out or just simple thing that will make it easier for you as a family. Again ask Disability living allowance as they can tell you what you need to qualify.

Hope it helps and if you need anymore help i can give you their numbers. Again it does depend on where you live, but if its in Herts i can surely help. But they will send you in the right direction anyway.

All the best.

Lea xx

Hi Amy I can’t help but can offer support. I’m a similar age to you and have a toddler also. She is healthy though- apart from a heart thing that doesn’t affect us on a daily basis. Can’t imagine how you are coping with your little boy. So tough. Life isn’t fair really is it… I’m sure things will improve and you will get the support needed. Sending you lots of love and positivity Love Lilly xxx

Hi Amy

Firstly and welcome. Sorry to hear of your diagnosis. It must have been a huge shock for you. I know that right now, you are concentrating on sorting out the practical things for your family but if/when the emotional fallout hits you, just remember that we will all be here for you if you need us. Some take it in their stride and others need a bit of support, there is no right and wrong way to deal with diagnosis.

I’m fairly sure you could be claiming benefits on behalf of your little boy. I have a friend with a 12 yo son who has mild CP and she has a car through the motability scheme for him so must be claiming full rate Disability Living Allowance for him. As you are his carer and you are struggling yourself right now, you could ask your local council for a Carer’s Assessment to see what further help you are entitled to. If you had extra help then your husband could get back to work and that would mean less financial worry too.

As others have said, you could try claiming PIP for yourself. There is a whole section on this website about benefits which would tell you what you could be claiming and where to start. It’s under the Support tab, just two sections down from the Forum tab. Worth a look.

Best wishes and hugs

Tracey xx

Hi sorry to hear of your diagnosis,you have such a lot to deal with,besides the ms,i would phone the local welfare rights dept,you can find the number through your local concil,or you could google it, they are really helpful and will tell you just what you can claim.you just have to tell them your circumstances.i found them to be of a great help.

Hi Amy,

My name is Asher, I too am newly diagnosed but I’m an older gal of 38 :slight_smile: My husband is self employed but has had to stop wok to look after me, so financially we have had some problems.

I also found it hard to get hold of information on getting help.

Here’s a list of the most helpful organisations that I’ve stumbled upon

Citizens Advice Bureau

My local council for housing benefit and council tax benefit

Occupational therapy department for appliances around the home like perching stools and a shower seat

PIP claim centre (I have just had my medical with them)

MS society local group (they can be found on this website)

And this webite has been brilliant. Lots of advice and lots of amazing people on the forums!!

Good luck with it all x x

Asher

H i there!

I can only imagine how hard it is looking after a toddler with special needs and then having a serious condition yourself! Your plate certainly is overloaded!

Other folk have offered advice on benefits, so hopefully you are wading through all the info and getting somewhere with it.

I just wanted to send you a warm welcome to the site. We are a friendly bunch of people, who try their best to give good advice, support and even some funny jokes, to brighten an otherwise difficult day.

luv Pollx

Thank you all very much for you replies. Lots of useful information that I will start wading through tomorrow. Had a terribly difficult weekend,unable to take more than a few steps unaided without them giving way. Thank god my husband has been at home or I would have never have coped. I am awaiting to meet with my neurologist to discuss what type of ms I have so unable to start any benefit claims as yet. My husband has compassionate leave for next week the we have to make the depiction if he is going to go back or leave his job for good. Right now as I am there is no way I could cope alone. I am unable to do very little for myself and defonatly unable to care for my disabled son. My right leg is completly numb,does this feeling ever go? I have lots of lesions on my spine and several on my brain,this condition came completly out of the blue last week and has got progressively worse since,the neurologist described my spine as ‘in a terrible state’ for my age - not very reassuring! I’m so scared what the future holds for me,I fear that I am never going to recover from where I am now and that is a frightening thought. I really need to start exploring what if any benefits we are entitled to because it may very well be that my husband has to leave his job. I receive high rate dla for my son and I receive carers allowance for him too but I’m hoping if my husband does take over our care that he will be entitled to carers allowance for us both,or will we lose my sons? I know we won’t lose his dla but losing his carers will be a massive blow to us. I’m finding it difficult to see how the pip is assessed,right now as I am I can’t do very much for myself,I can just about dress myself but I can’t stand and cook,do any household chores,I can’t drive,I can’t walk more than a few steps unaided and I certainly can’t get in and out of the bath myself. This is a massive blow to someone who is such an independent person. Sorry for all the waffle,I guess I’m only just starting to get my head around the diagnosis and at the same time need to start exploring so much to be sure that my family is going to be financially secure escpecially having a disabled toddler. I take him for appointments atleast once a week,physio,occupational therapy,speech therapy,play therapy,neuro disablilty clinic you name it and right now there is no way I can get him there and I’m so scared he is going to suffer now because I am unable to keep up with his appointments. I’m scared if they do turn me down for dla and my husband for carers allowance that he will have to return to work,what the hell will I do? Just one last thing,if my husband does become my carer,does he have to claim another benefit I.e income support in order for us to qualify for the housing and council tax benefit?

Hi Amy

You’re possibly in the middle of a relapse right now as the most common form of MS is relapsing remitting where there are clear relapses followed by periods of remission (either a full or partial recovery). For most of us, there will be a marked improvement with some residual symptoms like pins and needles or odd patches of numbness. I’m sorry to be so vague but that’s the nature of MS, it’s so unpredictable :frowning: Try to rest as much as possible in the meantime.

Hopefully you will start to see some improvement soon but if it does take a few months don’t worry as some relapses can take a very long time to recover from and it doesn’t mean you won’t regain full feeling in your leg. Gentle exercise helps if you can manage it, things like yoga or pilates. Ask your neuro about a physio referral perhaps so they can teach you some exercises which will help to strengthen your body.

Regarding the benefits etc, you really need to speak to a Benefits Adviser or call the MS Helpline at the bottom of the page and they can point you in the right direction to get the information you need.

Take care. Hope you start to feel better very soon

Tracey xx

Hi again. I am not surprised you are so worried. But being stressed will make your MS symptoms worse, so until things get sorted, you probably will continue to feel bad.

BUT

There is help available and let me tell you my own experience, in the hope it will help.

My hubby had to take early retirement at 50, to be my full time carer.

I am sure you will qualify for full PIP benefit. So do get that claim in yeh?

Your hubby will be able to claim Carer`s Allowance. I think it is around £59 a week. The amount of that and PIP can be found on the DWP site.

if your hubby does get CA,he can work and earn around £100 a week as well. (if he has time or energy, that is).

As your income will be greatly reduced , I expect you will qualify for other beneifts,

eg. housing benefit, rates reduction, income support.

I get Direct Payments, which gives me 16.75 hours a week, plus 1 sleepover, which really helps my hubby get some well earned rest.

I have a morning carer, who gets me up, toileted, showered, dried and moisturised and dressed.

I have 2 other carers who take me out shopping, to the cinema, to get my hair cut and they go to medical appointments with me.

I am unable to cook a meal or do heavy housework or go anywhere alone. This is all what the PIP claim will help you with.

As others have said, you need to get advice on what benefits you could be entitled to.

Just ring the DWP helpline and have a chat with someone. I have found their advice line very useful and the staff very kind and patient, if I have got tongue tied or muddled.

With regard to your little boy, try your Cerebral Palsy advice line too.

Good luck with everything and do try to look after yourself.

As your hubby has to return to work soon, tell your Social Services you need help asap.

luv Pollx

Hiya

Welcome to this brilliant site. You will get lots of helpful advice and support on here whenever you need it.

So sorry you are suffering at the moment, sounds really tough, especially as your little son has CP. It must be difficult for you.

You have been given some brill advice and I would echo what has been said by most of us in that you should definitely be claiming DLA/PIP.

I really hope you get all the help you deserve.

Shazzie xx

Hi, thanks again for all your helpful comments I ended up been admitted to hospital last Tuesday, i was unable to walk at all without falling and also was having issues with my bladder. I was in 3 days in which time I was reassured this is just a relapse and that things will improve. Whilst in there I was introduced to my ms nurse and also met my consultant. Was also given gabapentin. Since coming home I have called the dla helpline and filed a claim (not really sure what happens next) also contacted housing and council tax benefit to see if we are entitled to any help for these few weeks my husband has been home from work,still waiting to hear back from them. I think I am coming through the other end now. It’s shifted from my right to left and also into my neck coupled up with god awful electric shock type pains in my fingers and hands. My husband is returning to work on Thursday taps I am now mobile around the house with furniture although I wouldn’t dare go out alone or drive yet.

Hi Amy… I’m so pleased your seeing an end to your current relapse. Just a point on claiming housing/council tax benefit. Make sure your claim is backdated as when I tried to claim they would not backdate it and I had to complete a seperate claim. This was refused and they gave the reason that I should of claimed at the time. I appealed and won stating that I could not claim at the time due to being too poorly and having never claimed any sort of benefit before in my life was unsure of the whole system. Get some advice from a benefit advisor to make sure you claim everything your entitled to. Good luck with it all and I wish you well.

Welcome Amy! Whilst it has not been pleasant receiving your diagnosis, there will be loads of advice on here from a brilliant bunch of people so please try not to worry too much. As others have said, please get help to apply for PIP and you should qualify for Carer’s allowance for the little one. Wishing you well, Dawn. X

hi amy

like you im 29 and recently been diagnosed with ms but awaiting a final verdict on type. I have been surprised by the help and support i have received even when working. As it was all new to me i called the DWP and have received help from access to work for my mobility and also receive PIP something I didnt think i would get due not knowing which type of ms i have but my symptom have got worse and my doctor supported my claim.

You should give the DWP a call and find out your options as they couldnt help me enough and I was honestly surprised with the support and advice given to me.

wishing you well,Polly x