Last reply 3 weeks ago
New and confused

Hello, I’ve recently been diagnosed with primary progressive multiple sclerosis and even though it explains why I’m in agony and tired all the time, I haven’t been offered any help or support of what I expect or how to deal with it.
My family aren’t the sort to offer help or support. My partner has his own problems and doesn’t do apathy and my kids are all to young, plus I wouldn’t put this on them anyway.
I don’t how I feel about any of it, or who to speak to.

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vixen
3 weeks ago

Hello @kat_merritt, well, you’ve come to the right place! Everyone here will understand the shock of diagnosis and everything it brings along with it. It would be helpful if you could say where you are, so panoply can chip in with ideas. Also, what sort of pain you’re in, ie, whereabouts. It’s important that you feel what you feel, and focus on resting as much as you can. You e taken a positive step in expressing your thoughts on here x


potter
3 weeks ago

Welcome to the forum you can rant and rave here and we might even join you. Have you talked to your MS nurse about a therapist. If you belong to a church you could talk to your minister. Knowing what part of the world you live in would be very helpful. It seems like each country treats MS patients differently. I live in the US and there isn’t much help here, I just read that we have over a million people with MS in the US. Try not to stress about people not caring or helping that is just the way it is. My son rarely calls me and never asks me how am I doing. My husband gets annoyed with me because my cognitive skills are a little slow. My mother in-law doesn’t believe I have MS, I have one sister who tries to understand but she lives 2,000 miles from me. We are all in the same boat and have to depend on each other on the forum. Potter


kat_merritt
3 weeks ago

Hi, I’m in Grimsby.
I’ve had agonizing pain in my lower back, where I have a lesion, (I had the back pain for about 18 months before I was diagnosed with ppms)


kat_merritt
3 weeks ago

I’m in the UK. That’s probably more useful than Grimsby.


iris
3 weeks ago

Hello Kat Merritt. You are right to contact [ here for one]or read up as much as possible. Fore warned is fore armed. Secondly be aware that every one and case is slightly different. As vixen has said in the beginning there is being over awed by the shock of a specific diagnosis. At that time try to remember most of what your neurologist told you. It will be invaluble moving forward. your M.S. nurse should be able to clear up other issues. Don’t be afraid to request further appointments with your neurologist if you are worried or phone the m s nurse.. Your partner should come around later when used to the idea a bit more. As will you! I have Secondary progressive diagnosed when i was 61. Then the pennies dropped into place going back to when i was 20!!! Anybody else well like anything they are either superb or………… That’s life.try to be glass half full but on the other hand don’t beat yourself up if you are struggling. thats normal too! Lifes a funny ol game at the best of times. x


iris
3 weeks ago

O by the way i am in poole dorset.


stumbler
3 weeks ago

Hi @kat_merritt and welcome.

It’s unforgivable that you can be given this diagnosis and left to your own devices. Check out the “newly Diagnosed” tag on this webpage for some brochures you might find useful :-

https://support.mstrust.org.uk/shop

You should also contact your MS Nurse. What they are, what they do and how to get hold of them are explained here :-

https://www.mstrust.org.uk/a-z/ms-specialist-nurses

Their “bedside manner” is a lot more acceptable.


christiner
3 weeks ago

I agree with @stumbler that your MS nurse and the MS Trust are great places to start. There may a local group you can go to for support or there maybe other members of this forum that live near you.
I also have PPMS, I was diagnosed in the early 1980’s so I hope that things have changed a lot in the initial help and advice you are given! I live in Southampton but do message me if you have any questions and I will try and help.
Best wishes


watsoncraig
3 weeks ago

There is very little support and NO treatment for PPMS. We only make up 0.0002% of the UK population


mermaidia11
3 weeks ago

@kat_merritt
Ah love it’s a lonely ole road – but we all have the same Illness and all of us will become progressive eventually (until they find a fcuking cure and unicorns fart butterflies) it’s all the same and we are in it together lass

You could take all the advice from the crew and start off with getting a list of questions together for your neurologist and then accessing your MS nurse for symptom relief.

Then it’s time to get your big girl pants and crack on with a PIP application for some extra dosh; and then you can apply for a disabled badge (which just makes life easier) and ease yourself into this new reality.

Then it’s time to get on even bigger pants on, And ask for help. Just ask. They’re your family, you need some practical help at this time give you the time to you process.
Yes, your self esteem has no doubt taken a battering, but they love u chick. You know this? Right?

I would advocate then taking a step back and prioritise your priorities and more importantly; who priorities you.

Then accept we are all only human, and that no one will ever walk in your shoes, and is therefore ever likely to understand or empathise to the level required.

And give yourself a break! Now is the time to prioritise you. Whether that be going out (or in)with the girls. …or making popcorn with the little people and watching ‘puss in boots’ (my magic moment of the weekend)
Distraction, distraction darling! Please don’t dwell on it to much and give yourself time to understand and digest it, but don’t let it be a permanent houseguest.

Quality of life and spending time and being distracted by the people you love, laughing and loving is my prescription in the first instance.

Sending love, light and angelic delight to u chick ✨❤️🌈🧜‍♀️✨


vixen
3 weeks ago

@mermadia11. That’s a great point about being distracted, it honestly works. And @watsoncraig, I had no idea how special you are, put in those terms –
.0002 that’s quite extraordinary!


watsoncraig
3 weeks ago

Oh I am Speshul but would rather not be


mermaidia11
3 weeks ago

@vixen thanks love – you learn the hard way, but it’s the cornerstone of managing, mindfulness in motion eh?!

@watsoncraig – youre well spechul! It’s takes an extraordinary person to negotiate this bs – you’ve come this far mate, and if wishes were horses – well I’d have a fcuking field full!

My mother had the serenity prayer framed at the front door and only know I see it’s infinite wisdom lol

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

(I think this post has highlighted the unfairness of being forgotten when you are progressive tho – it’s really not all about the RR stage and meds that treat, but don’t cure …)

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