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Just diagnosed and scared

I am 48 years old. Independent, feisty and love driving. I have just been diagnosed and am petrified. It is so lonely. I cry all of the time and don’t know what to think. I cannot tell my teenagers yet, they have exams. My husband is in a state of shock. It is June and the closest neurology appointment is 12 September at a hospital 40 miles away.! I read that it is good to take drugs early, I don’t know what type I have? I used to care for end of life patients and I cannot find any good in this? I tried to phone the ms help line…but it was closed for training?! Any advice is truly welcome and I am sorry for my negativity, I just don’t feel very brave.

Hi alilim, sorry you have had this shocker, it’s hard I know all too well, but don’t be thinking about end of life! I worked in a hospice for 10 years & graduated as a palliative care dietitian & in truth, MS in it’s self, doesn’t actually kill, it’s complications of other things that can. Depending on what your ‘type’ is, you could be offered any number of DMDs or relevant treatment. I attend 2 hospitals, 1 15 miles away & the other 45 miles away. I know there are many things whizzing round your head at the moment, but there is plenty of info out there to give you a bit of insight into this lovely illness. You will feel better knowing what is happening as regards to treatment, what type you have & support from the MS team. It’s understandable how you are feeling at the moment, but please don’t think life is over, it’s certainly not. As regards to your appointment, it may seem very far away, but if you hear some of the Msers stories, you will realise yours is quite quick! Get some info, chat to hubby & when the time is right, tell the kids, the more support you have, the better you will get your head round things. As humans we are very adaptable, life has changed for you, hopefully not drastically, but you will & have to go on. Don’t dwell on what if, try what can I do now & be proactive, I am hoping MS wont rear it’s ugly head & make things hard for you. Think positive hunny, things will sort out (we all get down from time to time as well, you are just trying to make sense of it all) Take care Tracey xx

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Don’t worry & stay calm.

MS is when the lining of the nerve cells gets damaged & your bodies immune system attacks itself.

Boost your immune system with diet & exercise & keep cool.

People with MS get tired easily. It’s the bodies natural way of shutting down to heal & you can heal. Just be positive & take it easy. You obviously knew you were having problems & now you have the diagnosis. Don’t get stressed. It only makes things worse. You’ll be okay.

Hello

Getting that diagnosis is like a bullet to the heart. I sobbed like a baby, immediately feared the “end of life” worst, tried to get my boyfriend to leave me and looked up Dignatas to make sure I had an exit route planned - so please know that you are not alone - and please know the fact that you made it here and typed the message above means that you are brave (even if you don’t feel it yet).

I’m still getting my head into my own diagnosis (formalised on 13 June 2016, suspect from March that year) - but what I’ve learnt is that my own reaction, whilst understandable, was one driven from a lack of knowledge or understanding of the disease. What I tell myself to keep up the hope is the following:

(i) MS is not necessarily a fast track to a wheelchair / life of pain. 10% of people with MS have “benign” MS, 80% of people with MS don’t need a wheel chair 20 years after diagnosis.

(ii) Improvements in technology (MRIs only started being widely used in the 1980s - and are improving all the time) and drugs (first DMDs came out in the 1990s, Lemtrada (most effective first line drug) was licensed in the UK in December 2014) will move the stats above further in our favour. If you have RRMS (c.80% diagnosed with MS do) disease modifying drugs could be a game changer. If it is PPMS new drugs are being trilled in the UK (Ocrelizumab) and have been licenced in the US to provide further cause for hope. There are more and better drugs and treatments in development in the pipeline too

(iii) There are also drugs and treatments to help with MS symptoms - so don’t suffer them in silence - everything from physio to steroids, oxygen chambers to neuropathic pain relief.

(iv) Even if things do progress, there are brilliant people with MS living and loving life and cruising about in souped up wheelchairs

(v) There are things we can do today to better look after ourselves for tomorrow - brain health is important - take supplements (Vit D), eat healthily, exercise and build a good core, sleep properly, avoid stress and, above all, be kind to yourself and try to appreciate and enjoy the wellness you have. (And don’t get too drunk - this last is a note for myself as I have a hangover - oops)

For now, do whatever you need to help yourself over this shock - wine, chocolate, tears, screaming, punching things (I took up boxing! - cardio, core and cognative work out - and I like punching things!)

Who gave you your diagnosis? This should normally be done by a neuro rather than a GP I think - as they are best placed to confirm the details of the diagnosis and put your in contact re. next steps. Do you have access to an MS nurse yet? If so, hopefully you will have an appointment with them ahead of September. If not, perhaps talk to your Dr about getting put in touch with your local team. If you have any on-going symptoms the MS nurse should also be able to help with these

I hope some of that is helpful. Please feel free to drop me a message if it would be helpful to talk.

K xx

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Hi

Im 40, similar situation to you. The others are right its like being shot and beheaded and hung… its just absolutely horrendous. Ive found exercise and a good amount of it seems to settle my mind and seems to really help with patches of weirdness/sensations twitches and panics. Really get some air down you.

Theres some really cool people on here who will give you some great advise as times goes by. But i do really agree stress will really upset things. Crying does help in a weird way but eventually that dries up and youll settle down. Deep breathing has helped me alot just stand there and breath really deep for about 20mins. You need to take some you time and be quite selfish just for a while. I have developed a routine based on exercise breathing stretching vitamins or whatever becomes your thing can become a god send.

Also i am developing a newer me - one that has given up thinking - i dont think anymore and i don’t really plan any plans for “tomorrow” are just penciled in. Besides i never make the right decision anyway, just let it roll. Today will be a good day.

In this early stage don’t read to many of the stories on here, some are inspirational, some not so much. Ask questions that are relevant to you everyone will answer and youll get some good ideas and points of view

Appointments are slow - letters are slower, i waited months at a time during my investigations for letters - have i? havent i? meetings with ms nurses…Scans needles contrast this that the other…it all just seems to slow down and trickle into the back ground then the new you will emerge. Confident that you will be here tomorrow and the day after that and after that. Dont panic about something that just might not be the case.

Ive posted other things i do and take if you search it. Be kind to yourself your not alone

Thanks

N

Thank you for your brilliant and welcome words

Sorry, new to this and just diagnosed. Do I thank all comments individually? Because all of your replies are so useful and welcomed. Still frightened but less lonely because of this forum.

More questions sorry. Pins and needles in one arm sent me to the doctors in the first place. But now only four weeks later, it feels as though small fruit flies are nipping me all over, stronger pins and needles up the length of both arms and I am stiff and aching in my joints. I have strong knitting needles digging into my lower back. I guess this is part of symptoms? Do I expect this sensation to stay with me now forever or does it go away? Does it get stronger? Shall I just take paracetamol for now? Any advice is welcomed.

Katy, I am sobbing now because your brilliant and kind words have given me hope. I have to wait until an appointment on 12 September to see the neurologist, but given my symptoms over time and MRI scan the doctor is happy to confirm suspected MS? He is trying to bring the appointment forward so that I can get support etc. Current circumstances seem to have collided so much so, that it feels like a very lonely place, however I am keeping a journal and find it therapeutic. Have painted my nails two different colours to represent my kids - pathetic, but if in public and about to cry, I focus on them!? Have only eaten good stuff and pretended that I went to work yesterday by leaving the house at 7 an and went for a spa day. Thank you again. Have already dropped more questions on the forum.

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Hi Alilim,

I’m also new to this, waiting on my MS Neurology appt in four weeks, MRI showed several lesions in different locations and radiologist suspects it’s MS… They were looking for a tumour originally so it was the ENT consultant who broke the initial news. So although it’s suspected it can only be formally diagnosed by a neurologist.

From reading posts on this forum and asking questions I’ve found out a lot from many kind people who know a lot more than me at the moment.

I have come to terms with it and I now know it’s not the end of the world, it’s just a changed world and you’ll probably find that you start to look after yourself better and listen to your body.

I would definitely recommend the OMS 7 stage plan (got mine from Amazon), it’s so informative about how the immune system and CNS respond to different foods and vitamins, especially vit D along with benefits of exercise and meditation. This would be a really good starting point for you and is written by a man who has MS and supports all his findings with studies and science. It gave me a lot of hope that if I definitely have MS that there are ways of managing it along with meds, I started to make the changes three weeks ago and feel better in myself I think because it is a healthy plan anyway.

The other thing I have been taking is CBD oil in capsules for anxiety, mood enhancement and sleep, it’s not got TLC (the high) in it just plain old sativa extract from the cannabis plant and totally legal. My mood has never been better which means I deal with this a lot a better. I have my husband and son on it now, it also helps with pain relief and is natural.

I would recommend you ask questions on this forum and I agree with others comments don’t read too much elsewhere get it straight from the horses mouth, so to speak. Everyone is different but everyone has MS in common and it’s just good to talk and get things off your chest, especially if you don’t feel you want to talk about it all the time with family. My family are great but can’t answer my questions.

You will become calmer once you have a better understanding. You mentioned pins and needles, I have that almost constantly in my hands and feet but I’m used to it now. I also get what feels like electric shocks/zaps in my leg with no real pattern to it. I’ve been waiting since August 2016 to get to this appt next month, patience becomes a virtue or you’ll drive yourself crazy, as I did, but not now it seems we all have the long wait between appts and I come on here to ask questions as they arise.

Try not to drive yourself crazy, get informed ask many questions and just live as well as you can with plenty of nice treats and fresh air. You will become a very strong person despite MS.

xxx

Hi Alilim

I am around the same age as you, and have been diagnosed with RR-MS since 2013. Bummer, but if that’s the hand you are dealt, you have to take some time to gather yourself and come to terms with it… I have chosen to ignore it as much as I can! Eat healthily (I’ve ignored all the diet suggestions (OMS, Swank etc) and just eat what I fancy, with a goodly amount of veg and the occasional chicken, fish, etc - and treats of chocolate occasionally), try a bit of exercise if you can, drink lots of water, avoid heat and stress wherever possible - and just get on with your life as best you can! Good luck!

And no, you don’t have to thank anyone personally… this site is a great way of letting off some steam without taking it out on the people you have to live with, and although it’s nice when people ‘like’ what you’ve posted, it doesn’t really matter.

Fracastorius (Jane)

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Hi Patience,

I realised after responding to your thread on Steroids/DMDs that I hadn’t responded to this message. Apologies for that - I’ve been off on holiday for the last couple of weeks camping and trekking across the Auvergne in France (and eating too much cheese and drinking too much wine!) and lost track of the threads I was following.

I am glad to have been able to give some hope in those first few weeks post diagnosis - I know that is what I was looking for this time last year. I still join the boards looking for stories of people managing their disease and loving their life to keep me focussed on my own battle.

Focussing on your kids - and spa days - sounds like an excellent approach to me. Hope that things are looking up.

Take care

K xxx

(p.s. mints help the foul steroid taste if you haven’t discovered that already!)

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It`s very very early days for you darlin!

Let your brain take it in. Likewise your hubby`s.

I think holding off telling the kids is wise, till after the exams.

But dont leave it any longer, as they`ll feel left out.

It`s a chuff that you cant see a neuro till Sept.

But next month is August and then it`ll be September…not that long really.

I doubt you`ll progress too much without drugs till then.

Depends what type you of MS you have, as to what drugs may suit.

Dont google stuff. Ask us, we know more than Dr Google!

Hang on in there chuck.

pollsx

Thanks. Even after three weeks, I am in a different place and I have told the kids and my work. Amazed though that apart from this forum, there is no support. Still scared but it is making me reaffirm my life choices. Brilliant to hear of your travels etc…definitely on. my new list of things to do. X

Hiya baby,

There’s only one thing; legally you must do is advise the DVLA. Then you should advise your insurance; don’t worry they will not stop you driving. It’s just they could wriggle out of a claim if you don’t advise them.

Also if you have a mortgage; do you have ‘critical illness’ cover? If you have when the times right; claim.

Believe me; the only problem you have is what colour hat you going to wear at your boy’s wedding.

George

Hi everyone. I am 29 years old and newly diagnosed. Feeling very confused and scared about what the future holds. My neuro wants to get me on DMD’s asap and has suggested a trial for Cladribine. Does anyone have any experience or knowledge of this drug?

Thanks,

Emma xx

Hi Emma

Have you had a look on Barts Blog? They are very pro cladribine and have treated a number of patients with it. I also think there are a couple of people of Shift MS (Agnieszka and SewingChick?) who have used Cladribine and posted their experiences.

K

ps - you may get a better response if you start a new thread in the “everyday” forum

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Hi Alilim,

We all felt like you do on diagnosis, scared and uncertain of the future. You’ve found this website. 1st big step and a very positive one.Lots of experienced people to give advice, top tips and who will understand you.

My top tip is to keep a diary of all your symptoms, when they start and when ,if they,finish.

Write down all your appointments, who with and what the outcome was.

Means you have something to refer back to to see if you have relapses or if symptoms progress. Also if you want to apply for a blue badge etc you have evidence to back you up.

Tingling up my legs were some of my first symptoms - which i ignored. I take amitriptyline at night to help me sleep. Notice it more at night when I’m lying still.

Keep positive.

Jen xx

Other than this forum the most emotionally helpful thing I did was order (and read over a week or so, after just looking at them

on the table for the first week). From this web sight every bit of info I thought might be relevant to me.

It it may or may not help you as much but if nothing else their may be bits of info in it that you want to leave around so your

family can understand better.

Hey all, Just want to say what a great thread this is. I was diagnosed on Saturday after 7 long years. Wasn’t a shock at all as it was what I was expecting. Actually didn’t cry until I read this thread. It’s all still sinking in and I’m going from feeling great and thinking I can do this to thinking my kids will be pushing my wheelchair next week. It feels like a huge thump to the chest and in so worried! Mainly for my children. I’m a single mum and love my kids like there is no tomorrow. I’m remaining strong to everyone else but secretly my heart is broken. I’ve been in quite a deep depression for a good 6 months now and the doctors have just ignored it and said it’s because I’m a stressed out single Mum. What do I do now? Waiting for an appointment with an MS nurse but it feels like I’ve already been waiting years. Time is on a go slow. No real point to my reply here but needed a rant. Original poster I hope you are ok now? Thanks for reading xx