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I have just been diagnosed with MS by my neurologist, what happens next will i find out what type of ms i have.

just typing this is making it real. now very afraid.

joanna

Oh dear, Joanna, that sounds pretty dreadful. When you’re diagnosed with MS, I’m sure nothing resounds in your head except the words multiple sclerosis.

I would imagine that the next steps are that you will be given a follow up appointment with the neurologist, and also be referred to an MS nurse who will be invaluable to you. The MS nurses are often of more value to the newly diagnosed as they will talk about drug treatments, your symptoms and what help you need.

Mostly people are diagnosed with relapsing remitting MS initially. Even if the diagnosis later changes, about 85% of people diagnosed with MS have relapsing remitting. And when you are diagnosed with RRMS, you can be treated with a disease modifying drug (DMD). These are designed to reduce the number of relapses you have and to reduce the severity of relapses. Have a look at https://www.mstrust.org.uk/understanding-ms/diagnosing-ms/newly-diagnosed-multiple-sclerosis/relapsing-remitting-ms

The MS Trust have a whole load of useful leaflets and webpages. Have a look around at their publications, especially about things like DMDs.

Try not to panic. You are likely to be in a bit of a tailspin right now. But many if not most people with MS manage to get on with a good DMD and avoid relapses and therefore disability.

Keep coming on here, ask the questions that you need answered, there are lots of experienced people on this forum who will do their best to help.

Sue

hi joanna

well you’re finally out of limbo.

as sue says it’s highly likely to be rrms.

keep yourself calm, forbid yourself to get stressed!

mindfulness meditation has been a lifesaver for me.

you will be ok, you will be wonderful, you will be fabulous!

tell yourself this every day.

your ms nurse will help you to access all the other services such as physiotherapy.

also occupational therapy to see if any aids are needed in your house.

now have a nice evening, a glass of wine, a good film, a good cuddle.

carole x

Thanks to both of you for coming back to me it’s nice to know people are out there who understand what I am going through. I have contacted the ms nurse to see if I can get to see them soon as really stressing withe the waiting.supose I will have to learn to be patient, will get there in the end. Joanna

Hello Jo.

Take a deep breath. Sit back. Relax. You have just received some bad news. It is 5hitty, but hey, that’s just the way it is. It is not the end of the world. In fact, it is quite probable that life will go on uninterrupted!

You are under no pressure to get used to this new reality. The medical profession has simply placed you into a certain category. And they have categories for everyone these days!

You will go through the usual process of acceptance: a bit of anger, a bit fear, some denial, a sense of victimisation etc… ‘Enjoy’ the ride. Come out the other end with the realisation that your future and its unpredictability is just the same as anybody else’s.

Your mind will be full of questions. Your fears and anxieties will fuel a demand for answers that no one can give with any meaningful degree of certainty. This was the biggest hurdle for me and it remains a burden.

Take your time.

Symptoms will come and go and you will need to find ways to adapt to the constraints they create until they pass, so that you can continue with the life you wish to lead. It may well turn out to be a battle, but whilst your enemy will perhaps never be completely defeated, it can certainly be held at bay.

So arm yourself with sound knowledge and not just the fears of worst case scenarios.

Get on a DMD and realise that the side effects listed are rare and far from guaranteed. Consume only the best foods and drinks. Lots of rest and relaxation. Take vitamins D and B12. Avoid stress like the plague and… do not worry :slight_smile:

Ultimately, having MS is an excuse for you to treat yourself like royalty!

Good luck! And if you ever get stuck, come in here.

Hello Joanna

When I got my diagnosis I did not know what type so I understand. Like everyone else has said try to stay calm. We have all been there and are with you

Joanna,

I am in the same boat as you!! I was diagnosed 3 weeks ago, I still don’t know what type I have, I am waiting to be referred to the MS Clinic & nurse. I have more tests next week but basically know nothing else.

I know the advise is not to stress but it is so hard. I have so many questions, no one to answer them, just me to do research & scare the life out of me by reading about how I may not be able to do things in the future. I just want someone to give me individual advice & support that is tailored for me & not for an assumption about my future which I feel everyone is making at the moment.

I am off work at the moment (I work for the NHS & dealing with peoples health problems & my own left me a bit over emotional!) & do want to get back to normal but I am just so worn out at the moment - probably my emotions more than anything else.

Maybe the above will be of comfort for you, maybe not but I guess talking to someone who is in the same stage as you may help

Lynne x

Thank you all for you kind words - I am hoping to be seen quickly so it call all start as I have also been notified I am being made redundant.

talk about everything at once - I will get there eventually but in a ideal world it will be all sorted prior me starting a new job

oh well time will tell

I have now been diagnosed with relapsing remitting - still waiting to see the consultant which should happen in the next week, at that point she will discuss the course of treatment to put me on - where do i start looking so I am informed before the visit.

it is my left hand side which is effected - to look at me you would not know - on walking for any distance i drag my foot and agian with lots of use i can have issues with my left had (fingers) anyone got any ideas about drugs i should looking at.

all and any help will be appreciated. Jo (at least i was not imagining it, or going mad)

Firstly Jo, be kind to yourself. It’s a lot to take in & you run on auto pilot for a while. The MS society have loads of info on DMD & you can suss out what’s going to be best for you. It’ll be up to you what to take, they can advise you, but get some insight into each of the drugs from the MS society & you will be able to discuss your preferences. Good luck with it all, any worries, problems with anything, MS or not, come back!!! Take care Tracey x

Try here for starters: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

It will depend on what treatments are available in your area to some extent, for example, you should be offered all the first line treatments, (the old injectables, beta interferons and Copaxone, plus Tecfidera, maybe Aubagio, maybe Gilenya). But depending on what clinics are already set up they might be keener to start you on one rather than another.

Also, it will depend on how active your MS is, how aggressively your neuro feels it’s appropriate to treat it and your own feelings. So some people have managed to get Lemtrada as a first line treatment (and that’s probably the biggest gun out there at present!)

By no means allow someone else (MS nurse or neurologist) to make the decision alone. You have the right to make your own decision within certain parameters. So see what they propose, listen to their reasoning, if you’d prefer to be on a different drug, and believe you qualify for it, then ask for it. It might mean travelling to somewhere slightly further away in order to get the drug you want. But most neuros (I hope) will refer you to a colleague in another area if they and you think the best drug for you is available elsewhere.

Mine has always been willing to refer patients to other areas in order to access drugs for which he’s not got a prescribing centre set up.

Sue

And Jo, I’ve just read your post again, when you say you’re dragging your foot, do you mean that you are starting to get foot-drop? Have a look at this, it’s quite important to get foot-drop sorted if possible early because if it carries on you’ll do more damage to the rest of your body as you compensate for not picking your foot up properly.

Have a look at https://www.mstrust.org.uk/a-z/foot-drop

There are a number of different options, when you see your consultant ask for a referral to a physiotherapist who can help with exercises for you regardless of whether you’re dropping your foot or not.

Sue