Forum

New Diagnosis

Hi all, I have just had a diagnosis in the last week and I think I am handeling it quite well so far. This is probably because I have been tested over the past 3 years and have been expecting it all along. The hardest part is telling people around us to which we have had varying responses, all of which have been supportive but shock seems to be the main reaction. I have been off work due to falling and injuring my back, probably due to the balance issues I have been experiencing, and have just told my employer of the diagnosis. I only get paid for a month when off sick and so have a few monetary issues to address. I don’t know where to start! Today I am having trouble walking around and feel that I probably won’t be going back as I am not getting any better. My mobility has been getting worse over the past 6 months and the fall seems to have agrevated things to an extent that walking any distance is a problem. I have allways led an active life but writing this has made me realise that I have a more sedentery future ahead of me.

Hello, and welcome to the site :slight_smile: Many of us get so focused on getting the diagnosis, we forget that we have to get on with everything afterwards. It’s a bit like a first time mum focusing on giving birth without realising you actually have to take the baby home, and that’s when the long-term work begins. And there is a lot to do. Telling people is a bit of a minefield. So strange how different people react so differently, and sometimes in no way that you expected. There’s not really any advice on this one other than to say, give it time. Life sort of gets back to normal after a while. And the friends who have freaked out, disappeared and not come back probably weren’t worth having around in the first place! Re finances. Do you have a critical health policy? Or a critical health section on your mortgage? If you do, then start a claim - MS is usually covered. You can also apply for DLA whether or not you are working. If you have to stop work then you can apply for ESA. However, MS is covered by the Equality Act. That means that your employer has to make “reasonable adjustments” to allow you to stay in work. That could be anything from changing your hours to giving you different tools, seats, desks, etc. So maybe you can go back to work, if your current symptoms ease. Nearly forgot - if you have a pension, then ill health retirement might be an option if you are unable to work. If you apply for DLA or ESA then please get help to complete the forms. They are NOT as straightforward as they seem! The CAB can help as can some charities. It’s also worth joining the benefitsandwork website - they give you the “inside info”. Dealing with all this may at some time make you feel like you aren’t coping so well with the diagnosis. We all go through a whole host of emotions over the year or two after diagnosis (and later on too sometimes). It can be hard to deal with. If you are struggling, then please ask for help - it’s out there. I hope your back gets better very soon. Argh! Nearly forgot - check out the rules about sick leave and disability. I’m pretty sure that time off because of relapses isn’t counted as sick leave. Are you RRMS? If you’re PPMS, then you might be covered too, but you would need to investigate. Karen x

1 Like

Hi, just wanted to offer my support. Are you getting DLA? Hope so as it sure sounds like you deserve/need it. luv Pollx

Not getting DLA at present but have contacted them to get a form to fill. I work for a small company and drive for a living so changing jobs will be nearly impossible. Not sure about all of the abreviations used in the replies so I may need some clarification. Thanks for the support.

Sorry to hear about your diagnosis, though its good to know whats going on. I was diagnosed this year and still go through a lot of emotions, but actually getting on with life is not as bad as I’d feared, hope you find the same.

Oscar1 wrote:

Not getting DLA at present but have contacted them to get a form to fill. I work for a small company and drive for a living so changing jobs will be nearly impossible. Not sure about all of the abreviations used in the replies so I may need some clarification. Thanks for the support.

CAB = Citizens’ Advice Bureau ESA = Employment and Support Allowance RRMS = relapsing remitting MS PPMS = primary progressive MS It’s a whole world of acronyms you’ve joined! :slight_smile: Karen x

Thanks for the clarification. Have told most of my friends by e-mail and text as I found it mentaly easier. I have not had much contact directly with people so far, and even family seem to want to stay away. Is this common or do I smell or something.

Oscar1 wrote:

Thanks for the clarification. Have told most of my friends by e-mail and text as I found it mentaly easier. I have not had much contact directly with people so far, and even family seem to want to stay away. Is this common or do I smell or something.

I think that most people look for us to make the first move. They aren’t sure what to say. They aren’t sure whether to treat us any differently. They don’t know whether to offer sympathy or “you’ll be fine” type joviality or the (completely unhelpful, never mind wrong) “OMG, you’re going to be in wheelchair in two nanoseconds” panic. I found that if I didn’t make a song and dance about it and just got with life as usual, then so did everyone else. I guess everyone’s experience is different though. Good luck :slight_smile: Karen x

Oscar1 wrote:

Thanks for the clarification. Have told most of my friends by e-mail and text as I found it mentaly easier. I have not had much contact directly with people so far, and even family seem to want to stay away. Is this common or do I smell or something.

It is common, As Karen says, people do not know what to say. This can feel very uncomfortable for everybody. It can feel like a real snub when you have shared a very important piece of news with people you feel close to and it just seems to drop into an information black hole and you get nothing back. It happens, I’m afraid - try not to take it personally. People really do find it very hard to know how to respond to this sort of news. Don’t assume it means they don’t care. It’s fair to say that some people prove to be a bit of a let-down - time will tell you which of your friends are the real ones, and which are the fair-weather variety. But but try not to judge on the basis of how well or badly (or not at all!) they responsd to your news - in my experience, it is not a very good guide. Alison x

Friends and family are a minefield at the best of times! Does anyone know of any good articles on diet and MS. I have read some articles but I thought as you guys have more experience I would ask for your experiences and advice.

Diet is one of the controversial areas of MS. Most neuros recommend a sensible, balanced diet - after all, eating well improves our body’s chances of fighting anything. There are also a couple of schools of thought that sticking to a specialised diet can help MS. If you google George Jelinek, Best Bet and Swank, that’ll get you started. I’m not a fan (no way can it be that simple!), but some people swear by them. What you should definitely be doing, if you aren’t already, is taking a vitamin D3 supplement. Check out the vitamind3uk and vitamindcouncil websites. There is more and more good evidence that taking a hefty D3 supplement can help MSers. Like many people on here, I take 5,000iu a day. Lots of neuros and MS nurses are also recommending this these days. Hth. Karen x

Hi guys, I must say first what a lovely bunch of people you are!

I got diagnosed with ms just over a week ago. I’m in the process of telling my family and friends. So far it’s a bit of a mixed bag with some panic and pity but the best response was my m8 he just asked what tunes I wanted at my funeral! ( not very helpful but very funny)

I have a few questions if that’s OK? OK so my GP has put me on baclofen but he has had no communication whatsoever with my nuro. Is this wise?

Also in my letter from my nuro he said I had a number of high signal lesions, one in the cervical cord ,one in the thoracic cord as well as two in the periventricular region in the left and the corpus callosum. What does that even mean? Is this normal for ppl with ms?

What can I expect when I go to my first appointment with the ms service?

I’m not gonna lie guys I’m a bit bricking it!

Part of me wants to stick my head in the sand and pretend it’s not happening and the other part wants to arm myself with all the information available. I feel like my head is about to explode!

Hope you can take a moment to help me out guys…

Cheers! Paul

1 Like

GPs are sometimes infuriatingly reluctant to do anything whatsoever without say-so from the neurologist. SOunds like you are lucky enough to have one of the sensible ones who will prescribe stuff to help with symptoms. Baclofen is a drug very often prescribed to people with MS for symptom-relief, so your GP isn’t doing anything daring or strange here.

Not my area, this, but lesions are areas of damage - MS lesions are the areas of MS damage that are visible on MRI on the brain and spinal cord of people with MS. I know next to zero about the terminology, but even I recognize several of the things you mention as places where MS lesions do tend to show up.

Kind of depends on your circumstances and where you are and what ‘ms service’ means in your area. Expect information/discussions on how your MS affects you and what might be done to help. Also, potentially, what drugs you could be on (DMDs) to help protect you against future attacks.

You would be a very unusual person indeed if you weren’t.

See comment on ‘bricking it’.

But the exploding head business will calm down - only time will help with that. Time does give a person a bit of head-space, so just try to be patient and let yourself deal with the shock of dx - because it is a shock. An MS dx is bad news, no question. But it isn’t the end of the world. Most of us make a good life for ourselves despite MS, although a bit of expectation management is often needed.

In the meantime, the best source of info that I know of is the information on the main part of this MS Soc site - see the ‘What is MS?’ tab above. Clear, reliable and informative stuff - there’s a lot of weird filtered word out there on the World Wild Web, so it is good to have one source of info you can depend upon.

Alison