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just diagnosed, what now?

Ive just been diagnosed with MS, wow it really floored me even though i kind of knew. Months of tests and pain and here i am what comes now?

This is all quite confusing and scary im worried about my wife and family and the effect its having on them,everyone seems to know best its a very testing time, any advice anyone?

Merry Christmas to all

Jamie

Hi Jamie I understand how you are feeling right now as I was diagnosed yesterday. I saw it coming but that does not make it any easier. It is so hard on your family who try their best but do not really understand how it feels. How can they? Just know that everyone on here will support you as we’re all in the same boat. Try to take it a day at a time at the moment. You will have better days and worse days but that is inevitable. I have found my GP to be very supportive too and I can whinge and moan to her without worrying. Could you do that with yours perhaps? Thinking of you, Merry Christmas Teresa xx

Hi Jamie, yes it`s odd…even though we already know that we do have MS, being told for definite is still a shock.

Give yourself time to come to terms with it.

here are some things you can be thinking about, which hopefully will make some stuff fall into place and not be too much of a worry.

These are an MS nurse. Have you already got one? From what different folk say on here, some MS nurses are worth their weight in gold.others are not so great…hope you find one of the former variety.

Then there`s your meds. Are you on some now? I found my GP to be great for repeat scripts. Others will be prescribed initially by your neuro.

What about work and benefits? If you are still working, does your employer know of your health condition? He is obliged to put things in to make your working life safer and easier.

Or are you like me…retired on ill health grounds? Check out if you are getting the benefits you should be on. Log onto Benefits web site.

Home assessment…you can ask for an OT to come and see if your home can be made safer.

If your mobility is not great, your GP can refer you to the right people.

Yes, there`s a lot to take in, I know. But above all, Jamie, look after yourself and get as much rest as you can.

We`re all here for each other.

luv POllx

Great advice already

Couple of practical bits to add: you need to tell the DVLA, and check out your mortgage policy small print or anything else that might have a critical health element to it (MS is a payable illness). Worth getting your vitamin D3 levels tested too - a lot of MSers are deficient, and there is a growing amount of evidence that maintaining a higher than recommended level is good for MSers (not that your GP will probably be aware of this! Check out vitamindcouncil and vitamind3uk.).

Getting your head around the diagnosis is not so straightforward

I saw a counsellor a few times and that helped masses, but the only thing that seems to help consistently is time. Experience of actually living with and dealing with MS, realising that life still goes on and is still good a lot of the time, as well as it becoming more “normal” for everyone, gradually does the trick.

I am a big fan of talking, else everyone bottles everything up. People are usually scared of sharing their thoughts and feelings for fear of scaring and worrying the other person. They aren’t healthy things to bury inside so sharing and allowing your partner/loved ones to share too can be really helpful. A problem shared and all that.

Then you’ve got the whole lack of understanding dimension. Most new MSers and loved ones don’t know much about MS - so they are often imaging all sorts of crazy things. My first thought was of Jacqueline du Pre, the famous cellist who died of MS. “OMG, I’m going to die!” Absolute rubbish of course - I definitely do not have the very rare variant of MS that she had! So getting the crazy ideas out in the open so the person can be reassured can really help too.

Not everyone will be ready to talk though. Denial is a well documented stage of coming to terms with the diagnosis. I guess the only thing to do when the MSer and their loved ones are out of synch is to be patient and wait. You’ll come together at some stage. And if you want to talk and they don’t, you can always come on here!

Somehow or other, most of us get through it to the final stage: acceptance. Then we can move on, and get on with the important things in life!

Oh, nearly forgot… re everyone knowing best. GPs usually know next to nothing about MS, but there are some good ones out there. As Poll says, MS nurses are variable. Same goes for neuros. If you have an MS specialist, then they are the most likely to know best. You’ll get mixed advice on forums. There are some real crackpots about. There are also some very experienced and knowledgeable people too. It can be tricky to tell the difference sometimes though! Anyone who starts a conversation with, “Oh, my mum’s friend’s daughter’s boyfriend has MS and…”? Nod politely and tune out! Anyone who says that X is a cure? Ignore. Same goes for any websites that claim they can cure or massively help MS. If you want to know about MS, stick to the respected sites in the beginning at least: this one, the MS Trust and I would also add the multiple sclerosis research blogspot. If you want to know all the latest news about MS, then I reckon the MSRC RSS news feed is the most comprehensive (I don’t read the rest of the site).

In the short-term: take it one day at a time, like Teresa said. You’ll get there.

Karen x

Karen and Teresa say it all: I work in Health Care and two biggest things since my diagnosis middle of November this year:

Hearing a Consultant officially say it is MS (even though you know it is) and the whole saga of everyone knows someone with MS. (Ok, can cheat and say see it in hospital myself in my line of work but that is different)

I have decided the route of getting counselling and support from Occupational Health as though at the moment still mobile and emotionally stable (not in denial, though some of my colleagues think I must be!) I think to have that fall back of professional help is vital. My family will eventually tire and can only take so much of me going on about it! Not happened as yet though.

Hi Jamie

It’s a big deal receiving a diagnosis so it will take time to get your head around - but I doubt your family will tire of you and your ms…

You’ve had some fantastic responses already so I shan’t repeat what’s already been said.

It may also be helpful to all of you to either download or order some publications on ms which you can do from this website and the ms trust. There’s a wide range to choose from - which also include work related issues, benefits and financial help as well as tips on coping with symptoms, self help ideas and the various meds available. Definitely worth a peruse! It may help your family gain a better understanding too. It’s not something that most of us know much about unless it’s been thrust upon us.

Have you an ms nurse? If not then make a few enquiries. Mine is worth her weight in gold for sure & I have regular appts with her - she’s my first port of call for anything ms related and I can contact her by phone or email in between appts if needs be, as I can my neuro.

I also had an OT assessment. The guy who came to see me was brilliant and through him I received a bath seat which raises/lowers me to enable me to take a shower or bath when my legs are particularly bad, my sofa was raised to a better height (I have a retro sofa so it’s quite low) and a blue badge. He also advised me on other things that may help me should I need them.

The other thing is not to feel pressured to tell people if you don’t want too. Obviously it does help if your employer is made aware of your health as there may be changes and adjustments that can be made to benefit you whilst at work.

Good luck and remember that we’re always here if you feel the urge to chat or ask questions…

Debbie xx

Hi Everyone, been reading all these thoughts and feelings and advice and just want to say thankyou…

…I’d like to say hello too, today is my first day posting on this forum, I was given a diagnosis of RRMS end of July this year and I’ve kinda hid a bit since, probs denial, I was well, wellish, managing work and family life (I have a wee boy age 6). I told some of my close friends and family just after diagnosis and my boss and my closest coleagues and each time I told anyone all I did was cry. I stopped telling people then and just got on with life and it’s normal day to day challenges and needs.

Then however that changed, in October this year. I fell down the stairs at home, didn’t break any bones, but caused quite a bit of muscle damage and needed to be off work for a few weeks, then my husband was made redundant and my workplace are undertaking a jobs/role review cost saving excercise and with the trauma of the fall and the stress of the jobs/money I had quite a bad relapse, with a lot of reduced sensation, covering about a quarter of my body and left leg weakness and foot drop, so I was stumbling even walking a few feet. Now I’ve ended up signed off work sick for longer and my GP has had to state an “MS Relapse” on my sick line instead of muscle damage/pain, so I need to tell more people. I’m going to see the Lead Clinician at my work tomorrow to tell him that I have MS, as he’s been asking about what kind of fall I’d had that’s keeping me off work so long…not looking forward to it…but it’s such a help reading all the advice and thoughts on these forums…and a wee chance to rant and “talk” a bit…invaluable…thankyou again. Julie X

Hi Julie, and welcome to the site

Just wanted to wish you luck tomorrow. Remember that you are covered by the Equality Act so no need to be apologetic with the Lead Clinician - it’s not your fault you’ve got MS after all!

I hope the relapse improves very soon.

Karen x

Hello Karen and thanks…I’m taking him in a bottle of nice wine! and I just hope I don’t cry telling him :-S

Julie X

Hi Karen,

Hope you are having a good day.

I met with my Lead Clinician this afternoon and he was really nice, thanking me for including him in those that I have told and told me to not come back to work until I am completely ready, I felt no pressure :slight_smile:

…Re my current relapse, I’ve been getting some strange “crawling” type sensations on my body almost “nipping / biting” feelings, I guess it’s my feeling / sensations coming back, hope so!

Julie X

I’m glad it went well

Fingers crossed for you re the new sensations!

Karen x

Have read this with interest. A number of the doctors and consultants I work with/teach were involved in my appearence in A&E back in March. (Frog marched by the Resus Officer!) I have told them all as they were interested in the outcome 8 months later, which is very supportive.

Good luck with the feeling / sensations coming back.

Hello VinceA,

Hope you are keeping well just now.

I’m a Transfusion Nurse Practitioner and work within a small group of practitioners across Scotland. But within the individual hospitals we cover, we do build working relationships with the lead clinicians and lead nurses etc… but this relapse I’m currently going through, is my first relapse since diagnosis, so I haven’t felt the need to notify or discuss having MS with them, but now it seemed the thing to do, kind of “spreading my net” of people in the know.

So far I have had interest, understanding and support, which is great ! I’m off work sick just now and taking Lyrica to dampen down the troublesome sensations, however I hope to return to work in the New Year and will have to answer some questions and tell more people then.

It’s just the getting used to having MS and discussing it, taking ownership of it, which in many ways for me has felt like I was talking about someone else when I spoke of it, not talking about myself !

A huge learning curve really, and reading forums on this site have been of great help !!

Julie