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New PPMS diagnosed

Hi all.

Recently diagnosed with MS, then told it was PPMS which was a bit of a kick in the teeth as there is currently no medication available.

Currently off work sick and feel I’m having to sort everything out myself. Access To Work for example. I’ve got to get 3 quotes from different taxi firms and they ask if I can get a collegue to give me a lift. I feel there they’re reluctant to give me any help. Whinge over for now, sure there’ll be more.

I’m like a caged lion trying to get DLA. Have an appointment next week with someone to help me fill the claim form in.

What advice can you offer to someone like me who feels everything is against him?

I know how you feel I havnt been diagnosed yet but my Rheumalogist thinks I have MS and symptoms are bad. I too am on sick leave and have been pondering how I can get to work as I cant drive now due to possible mini strokes…Its a nightmare hun, I applied for DLA and been turned down, when I looked at the reasons it sounded like they were looking at a different application form but I contacted CAB and they are taking over to help me as I just cant do it. All I can say regarding work, DLA is one step at a time, life seems bad now but it will all work out in the end and ther eis always a helping hand, concentrate on you and your health right now the rest will fall into place, I’m sure.

Hi and welcome to Mr Grumpy and Wall… and !!!

It certainly takes a while to get your head around having PPMS… but believe it or not it does get easier. I think you are both going through the worst stage actually (well Wall waiting for dx is the worst stage) but also trying to get all the ‘sorting out’ done!

DLA is a tricky benefit as it depends very much on how the questions are answered and how much info you provide (the more the better!). The best advice I can offer is joining a website called ‘Benefits and Work’ which costs around £20 for annual membership but is worth every penny. They have step-by-step guides to applying for all benefits and appeals processes written by lawyers who are benefit experts.

Telling the truth of course should be enough… but it’s not. It’s the way you tell the truth that matters. Glad you both have help with it and best of luck.

I don’t know much about Access to Work. As this is a very small group on this board (did you know only about 10% of people with MS have PPMS?) I think it would be worth you posting on Everyday Living for advice… much much bigger group.

My top tip with dealing with all this… symptoms, benefits, mental anguish () is to take it one day at a time. Remember, just like the other types of MS, PPMS is different for everyone. Just because another person with PPMS has a particular symptom or disability doesn’t mean that you will get it too. We all have our own bespoke version! We have one user on here who was dx over 40 years ago and is still doing well and living independently, and another user who was dx 22 years ago and only recently gave up work due to redundancy (nothing to do with her PPMS).

Also at this time there is more research going into PPMS than at any other time in history! There is real hope of new treatments coming along to slow or halt the progression and further along the line even a possibility of a cure.

This is a great place to be with people who know exactly what you’re going through for help, support and friendship. Sometimes ONLY another PPMSer will understand what you’re going through.

Take care and look forward to seeing you both on here again (ask questions about absolutely anything!).

Pat x

Thanks for your replies my new friends.

I first thought that I’d had a mini stroke as my right side was significantly weaker and my speech was distorted and a massive list of symptoms convinced the expert it wasn’t that and an MRI scan confirmed it to be MS.

I applied for DLA straight away and was told it will take 8 weeks to get a reply. I got knocked back in 2 days! This time I have experienced more symptoms and will re-apply with more info. I’ve been told that they reject lots of people straight away. They told me I was rejected as I could do certain things even though I’d already said I couldn’t.

I see my MS Nurse next week and will put my name forward for any experimental treatment.

Hope my seeing a guy next week will give me great points to claiming DLA. Hope to have some to pass on too!

Remember, for DLA, describe your symptoms on your worst days. Do not put that you have ‘good days’. It is better to say you have ‘better days’… but best to concentrate on worst days.

Repeat yourself on every question if you have to. Eg: If you put that you cannot walk far because of fatigue, don’t take it for granted that they will realise fatigue affects everything else. In every answer put about fatigue.

Add extra pages with more info. Don’t worry about how many. The more info the better. Put at the end of the answer “Please see additional information page 3” (or whatever)

Then on the page with the additional information put “Page 3 Additional information to question 5”. (or whatever)

Put your national insurance number at the top of every page of additional information.

Write everything in absolute detail. Give examples. Eg: If I try and climb stairs I cannot lift my foot high enough to put on the stair. I very quickly become very tired because of my MS fatigue. I have to stop and rest after 3 or 4 stairs.

Continue with very detailed info like this with examples.

It is a bit like writing a book… and it is an emotional experience as we often don’t look at our own symptoms in such detail… but it is necessary to get the award.

Good luck Mr Grumpy,

Pat x

Hi Mr Grumpy,

I’ve just applied for ‘Access to work’, was quite straight forward. I got my 3 quotes…they were all roughly the same. I called my advisor, gave her the quotes. She asked me which cab firm I normally use and said she was happy with that. You probably know this already but you only have to pay whatever the bus fair would be to your place of work. Its pointless asking you if a collegue can give you a lift…what happens if they are sick or on holiday?

I then received a letter with questions for my GP. I had to pass the letter to him and he then had to write to my advisor to answer the questions, My advisor then called me to say the letter was great and that my GP had covered all the questions. I’m now waiting for an OCC health appointment at work (I’ve been on sick for 7 months) to discuss my phased return. Once I have the details of how many days I will actually be at work each week I’ve to call my advisor again and hopefully that will be it (fingers crossed). I know its a right faff Mr Grumpy but if it saves you any money its worth it. Good luck and let us know how you get on.

Oonagh

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Thanks for the advice Oonagh.

I can get a lift to work but as I generally get the bus home, I’m thinking what’s the point of telling them and just get a taxi there and back.

I’ve got 2 quotes from taxi firms so far (one was a bit pricey so they’ll get knocked on the head) and one asked to be rang back on Monday when the boss is there as he may be able to give me discount for a contract. I’ve been told I can get a phased return to work and I can change my hours once I get the benefits sorted out.

I presume Access To Work includes from work too and do you pay the driver yourself or do they send an invoice to DWP for them to pay?

I plan to return to work in 3 weeks and work just 3 hours for the first 2. Just been out for a walk in the local shopping centre that finished me off and nobody stood up at the bus stop to let a hobbling guy with a stick sit down. My tolerance level was at an all time low. Didn’t help on the bus that a guy was sitting in the seats for the disabled taking up the seat next to him with his shopping.

Take care.

Hi Mr Grumpy, It may have changed now, but when I was at work I claimed Access to Work and like you had to get quotes for three different taxi companies then get the cheapest. I then had to pay the driver every time I got a taxi and get a receipt. I then had to send them off to Access to Work at the end of every month with an accompanying form that they send you and they paid the money I had paid out directly into my bank account less what you would have paid for bus fare. Hope this helps but may have changed as now nearly four years since I was at work.

Hi,

You’re right Nanny McPhee, its the same now. They prefer to pay you monthly but you can request to be payed weekly.

Oonagh

xxxx

Hi, forgot to add that, yes Mr Grumpy, they pay for your taxis to and from work.

Oonagh

xxxx

I’m now thinking hmmm about this Access to Work thing. They only ask for the cost of a single journey, which is £3 but when my lift is off, I get a return ticket which is £4.50.

Will they take the return ticket into account otherwise it will mean paying £6 for 2 taxi fares.

Confused now,

Saw the guy yesterday to help me fill the DLA form in.

I gave him a rough copy of what I did and he crossed through anything that mentioned getting a bus. Don’t admit to this is. It’s basically getting a lift to the door for appointments.

I’ll send the application off in the next few days and keep everything crossed.

Fingers crossed for you Mr Grumpy!

Pat x

Go back to work on Thursday on a phased return. Dreading it. Got my Access To Work sorted and have my taxi booked to bring me home.

Somehow I’ll have to educate people about what a swine MS is without preaching to them.

Good Luck with your return to work Mr Grumpy. Hope you manage to educate those people who you work with, all about this disease. Teresa xx

Hi Mr Grumpy… yep it’s difficult to find the balance… if you just say something like ‘If you have any questions about MS… I’m your man!’… sort of make a joke about it, it might work.

I think sometimes people are embarrassed to talk about it or ask questions, and if you show them that it’s ok they are more relaxed about it’s realise it’s ok to ask about it.

Good luck with going back to work hon. Although dreading it now it might be ok when you’re actually there… but don’t push yourself too hard. We know how much the gorrilla hates being pushed!

Pat x

Day one over. Off for a nap shortly.

Taxi was bang on time to take me home (and to think I was sceptical about it). I was on a downer at the time though. As I hadn’t been in since November, wished colleagues a happy new year!

Glad the first day is over. Hope it will get easier!

Well done Mr Grumpy…

Pat x