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New Member in Limboland

Hello all, new member.

Am hoping some kind soul can give me some advice really as to what I should do next.

I have had typical MS symptoms that have gradually worsened over 18 months or so. I had my first MRI in November 14 which showed lesions in the brain & neck. My optician also identified an area on optic nerve of damage indicating an episode of optic neuritis. Also had the VER electrical tests + gallons of blood tests.

In March 15 had 2nd MRI and have recently seen the neurologist who, while he says the most likely explanation of my symptoms is MS, because the 2nd MRI shows no significant changes, he cannot say definitively that it is MS and to see him again in 6 months.

I must admit to being pretty horrified at the prospect of 6 months more of uncertainty as this is affecting pretty much every area of my life. Mobility, mental acuity, vision, bladder, emotions & moods, fatigue & I just don’t know what I can do. I have an appointment this coming week to see my GP to see what they suggest and, at the neurologists suggestion, with an MS nurse, but they cannot see me till June.

I have quite crucial decisions to make regarding my working life before I see the neurologist again and I don’t know how I can make an informed decision in my current position. Neuro did not say he was planning on repeating the MRIs in 6 months, so I don’t understand how he will be in a position to make any new evaluation when I see him again and dread the prospect of being in the same situation of not knowing again.

I hope to goodness I do not have MS and that my symptoms are a clinically isolated episode that I just have to learn to live with and manage, but I do need to know if they are something that is going to worsen to enable me to make the work & life decisions upcoming.

Sorry for such a long post, but I am feeling a little as if I have been just left to get on with it, whatever ‘It’ is.

Don’t we all? Sally, you have put your finger on one of the hardest things about having neurological trouble. There isn’t any way around it, I’m afraid: sad to say, certainty is not an option. Life with a CIS is stiff with uncertainty, and life with MS is no better (if anything, it is worse because odds against future good health are so much poorer).

Many of us have been in the position that you are in. That is something that happens a lot because MS/possible MS tends to hit first when a person is establishing herself in the world as an adult and trying to shape her long-term future. It makes life awfully difficult, I know.

Try not to panic. All I can say is that you will find a way of dealing with whatever comes along. I hope that you reach calmer waters soon.

Alison

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Hi alison,

Thank you for your reply, it is really appreciated.

Sadly, I am not a younger person, being 51 and the decisions I am wrangling with are, as briefly as I can, a question of hours.

I am a single parent & my son will be off to Uni in September. As a single parent I am allowed to work 16 hours a week and claim tax credits. However, once he goes to Uni, I am no longer considered as a parent and would have to work 30 hours a week to qualify for tax credits without which my wages would not cover my rent & bills, let alone food.

I have a job, that at the moment, I can manage with difficulty. I tried just before all this started increasing my hours to 30 and became so ill and worsened my symptoms so badly, that the thought of having to do that permanently fills me with despair.

I think I am just stuck and the timing is particularly unlucky as my financial situation will overtake the medical one leaving me with no option but to give up a job I can currently manage, to take one that I know will make me worse and which, if my condition proves one which is likely to be progressive, I will not be able to do.

Sorry, I know none of you can give me any answers, but it does help to vent a bit without having to burden my poor son.

I am sorry that you have so much on your plate, Sally, and I wish that things were easier. It does sometimes seem that life is doing it on purpose, doesn’t it? Please do vent away - that is one thing this forum is so good for. Everyone’s situation is different, but there are things that many of us on here will have experienced or felt in some form or another. It is a safe place to let off a bit of steam.

Alison

hi sally

see your gp for a good talk about your problems because he/she may be able to help and at the very least it will get onto your medical records.

you may be entitled to Employment Support Allowance (ESA) and Personal Independence Payment (PIP).

the medical records could prove useful for this or your gp may be asked for his opinion on your health.

maybe get advice from CAB.

try not to get too worked up about it all. not easy i know but stress makes my nerve ends tingle and it ain’t good for anyone.

i don’t know what else to suggest because you have problems on the ms front and financial worries as well.

don’t neglect having some “me-time”. maybe treating yourself to a coffee in a nice coffee bar or a long soak in the bath.

if you aren’t too far away from a ms therapy centre, it would be good to try there because they offer loads of therapies -some free and some at a subsidised price. you don’t need a definite diagnosis.

good luck, keep us posted

carole x

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Thanks Alison & Carole,

Feeling inspired by your advice, I have this afternoon been on the phone to ESA and PIP and I fall through what seems almost a deliberately designed loophole.

I cannot qualify for ESA because I work 16 hours a week, has to be under

I cannot reduce my working hours by 1 hour to qualify for ESA as I would then not qualify for Working Tax Credits

I cannot qualify for PIP as I do not have a formal diagnosis & do not currently fill their strict qualifying guidelines

I cannot claim the disability component of Working Tax Credits which would allow me to continue working 16 hours rather than 30 as you have to be in receipt of a qualifying disability benefit i.e ESA or PIP neither of which, as above, I qualify for.

So the perfect catch 22.

There seems to be no help for someone who has a condition that allows them to work some hours but not full time but is not yet disabled enough or is not yet formally diagnosed as having a chronic condition, even though the symptoms and their effects remain.

Apologies for sounding so mercenary and if it is all about the money, but the worry, stress and anxiety it is causing is making me so low on top of my physical stuff.

Hi,

I’m not in a position to dispute most of the information you’ve been given - however, I do take issue with one thing. I’m pretty sure that PIP (or ESA, for that matter) does NOT require a formal diagnosis. It’s assessed entirely on how you are affected - what you can or cannot do - and NOT on the name of your condition - or whether it even has a name.

I appreciate this may be academic - it is in my case, as I have no chance of qualifying for PIP, as I’m considered “just too well”, despite having a confirmed MS diagnosis. There are many free and anonymous self-assessments you can do online (just Google) to get an idea whether you would qualify. I always come out with “nul points” - assuming I was scrupulously honest - which I would be, of course. So as my answers indicate I am not even a possible “borderline” for the lowest rate of any benefits, it’s clearly not worth the stress and hassle - for me personally - of going through all the paperwork, and the assessment procedures.

However, your circumstances may be different (though I suspect not), so I just thought I’d mention that diagnosis doesn’t - or shouldn’t - have anything to do with it. Yes, you would need (ideally) some sort of medical evidence to confirm how you are affected, but it shouldn’t matter if they add: “but we don’t yet know what’s causing this”.

The name of it is completely irrelevant.

Tina

x

Hi Tina,

You are right, it does not have to be a formal diagnosis but, like yourself, I am just ‘too well’ to qualify. I too have done the online self assessments and would not, if answered honestly, currently qualify.

I want to carry on working and I have a job that I can manage with some difficulty and it seems utterly ridiculous to me that I will have to give that up to find one with longer hours that, with my certain knowledge, and with the high medical probability of worsening, I will not be able to fulfill.

Sally x

I

Oh crumbs. It would be almost funny in another context, wouldn’t it?

I wish that the news was better.

Alison

It would

Seems that is as far as I can go with the finance side at the moment. Will just have to wait, like so many of you have had to do before, and see what the next 6 months brings.

Seeing GP tomorrow, to at least get things on medical record as suggested & will also try and get to CAB at some stage. Think I will start keeping a symptom diary for when I see MS nurse in June to see if they think it worth seeing the Neurologist sooner.

Thanks all for your replies.

Sally x

1 Like

Good afternoon all. Still trying to find a way through the financial maze above with little progress but if anybody can enlighten me, I have a new question.

All my symptoms have all been on my right hand side for about 18 months, however the last week or so, I have been experiencing new but different things on my left hand side. They are not the same as right hand symptoms. Does anyone know if this is a typical sort of thing to happen? Does this make it less likely to be MS as I have read that it does not usually present on both sides, although not sure if this is accurate or if it remains true if symptoms differ.

I have spoken to the MS nurse who has said to monitor and call again if persisting or worsening.

Thank you

Sally