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Positive DX today - I'm a mess

Hi everyone,

I got a positive DX today from my lumbar puncture results. I was fully expecting them to tell me it was MS and I knew they would but it was a massive blow. I went to my neuro apt with my sister and the neuro called me in. She had a nurse with her and we were all walking down a hallway. My sister said “whos that” about the nurse and my neuro said “this is Verity shes one of our Mmmm” then she shut up. I then said “shes an MS nurse” and the nurse turnt around and said “i’m one of them yes” and that is how I was told in a hallway that I have MS.

Ive cried all day and been a total mess. I know i need to get some perspective but it’s really knocked me for six. I’m so angry at all the stupid cliches that people say and people telling me I must be positive, I just need some time to fall apart and I think in the current situation I’m allowed to do that for a bit. I will find the right head space again and I will push through but right now I wanna sit and cry and feel sorry for myself and nothing is going to change that.

12/07/2013 @ 13:00 my life changed forever.

Oh sweetheart, I can truly truly feel your pain. I have no words of comfort and no platitudes to offer other than, like everyone on here, time and space to just ‘be’. There is no wrong or right way to react and respond, only your way! Think about what you need from your loved ones…space, hugs, talking, no talking and try and share that with them when you feel able. We’re here for you, night and day! Take time for you and stay real, dont ever be sorry for saying it how it is! Mandymoo xx

Hi Emma

I was diagnosed 2 weeks ago with PPMS, also with a positive LP. My dad was with me and I also suspected when I got the appointment letter. It was still a huge shock as I’d been in hospital for 3 days prior to that where all my reflexes were checked very thoroughly and I was told by the registrar and Neuro that I almost certainly didn’t have ms but spinal cord damage. The damage is permanent and all they can do is send me to the pain clinic.

I grieved after that diagnosis so that’s probably why I managed to keep a straight face when telling the family. I hope your friends and family give you some space while you come to terms with things, but please don’t shut them out as they too will be grieving for you.

Take care

Min x

Hi Emma, I am so sorry that you have this diagnosis and I know what you mean. When my beautiful 16 year old daughter was diagnosed last month, I wanted to fall apart but tried to hold it together in front of her so she would be less scared. The amount of people who then went on to tell me that they knew of someone or knew someone who knew someone who had M.S. and they were fine and it was all going to be ok, and how they carried on life as normal, held down jobs, families and life was good when all I wanted to do was curl up and cry my heart out at the unfairness and fear for her future before her life had even began. I know they thought they were helping but that did not help. It is a horrible diagnoses, it has changed her life, it has changed all our lives, it has affected what she wanted to do in the future so although it may be ok, at this time it is not ok. We need time to come to terms with it, accept the diagnosis and deal with the all the stuff that goes with the diagnosis. Even going on holiday is becoming a pantomime. I had to contact hotel and make sure they have a fridge in the room to store her medicine, I have to have a letter so we can take all her medicines in our hand luggage, we have to carry needles, medicine and a sharps box with us, we have to make sure our insurance covers us when we are away incase she takes not well, the things we planned to do on holiday are now things we may or may not do on holiday depending on how she is feeling and trying to make sure she does not feel guilty if she is not up to doing the things we planned. She had to leave college, she takes paracetamol, vit D and self injects every 3 days now. None of this is ok. We need time to grieve. I hope you get all the help you need and someone who if not can understand fully what you are going through can at least empathise with you. If you want to curl up and cry, do it. If you want to rage at the world, do it. Just make sure you are in a safe place with someone to hold your hand while you do it. Good luck. Linda x

Hi Em, oh love…yes of course you need time to cry…to scream…to yell…or whatever else you feel the need to do.

having such a serious diagnosis would knock anyone for 6…no matter how long they thought they had prepared themselves for such a thing.

You need to grieve for the old you. But you know, the real you is still there…it may take some delving to find her…but you will and in your own time hunny.

In the meantime, accept any help on offer and never beat yourself up for having MS. It`s a bully, a swine and a monster that has to be accommodated into your life.

But please remember, life can and is still very worthwhile and valuable with MS.

lots of luv and cuddles,

Pollyxx

Hi Emma

I was diagnosed last month. I had my first symptom in January and then test after test before finally being diagnosed. I knew it was coming and on the day I was almost quite excited to be officially diagnosed, then got my diagnosis and felt shocked that this was it.

Can I ask how old you are?

I’ve also had all kinds of reactions but I felt some people were putting me in my place by telling me that it wasn’t the end of the world, and then you have to come back and say, “oh yes, I know, could be far worse” but then it’s not them with it is it?

In the time since my first symptom I’d been through all kinds of emotions as I had a 7 month old baby at the time and just all the why me questions, and what did I do to deserve this, and God must really hate me and then the worry that my kids might inherit it…

Give yourself time to grieve and accept as much as you can at this stage.

The way I’m looking at things at the moment is that I’m not disabled yet and to make the most of my mobility whilst I still can. I may not have another attack for 4 years and so I can’t stop life waiting for it x

@ RachelsMum

YOur daugheter may only be 16 but as ut has been caught so early then statistically she should have a much better prognosis than someone who has been diagnosed in their 30’s. Give her time to adjust and accept that she has MS and just be there for her.

Emma

I expected the dx of MS before I went in to see the neuro so it didn’t come as a shock to me. All I can say to you is give yourself to grieve and express all the other emotions that come along with MS. IT probably came as a shock for you the way you found out. You will get through the initial shock of being told what it is wrong with you and have to male adjustment for the MS. All I can say from experience is that MS is not life threatening, it is life style changing however and you need to adjust what can and can’t do. Believe it or not I only really starting living once I had been told that I had MS and got my head around it. I am now looking at doing a p/t OT degree and I play wheelchair basketball to keep fit. Liffe doensn’t end with MS it just changes thats all

Andy

Hi Emma, sorry the return doesn’t work for me on here so all one long sentence. I was fully expecting my diagnosis too and I thought that I would be fine with it but I was a blubbering mess for 2 days after. The first person I told was my Mum and I couldn’t even talk because I was crying so much. When I went back to work the first person who asked me if I was OK had a crying mess in front of them and I was whisked away into a meeting room and the blinds shut, my colleagues all knew that I was being tested for MS so my friend emailed them all to say please don’t ask me about it as although I had expected it, it was still a shock and that I would discuss it with them when I felt ready. I will say that 6 months after diagnosis I still get tearful about it and yes it is a grieving process so some days you can be positive and others you will feel so negative about it all but it’s something you need to come to terms with in your own time not when everyone else tells you too. Now that I am receiving the right treatment and know who to go to when things are bad makes all the difference to being in limbo. I no longer feel that I have to go to work when I can’t feel parts of my body as there is a reason for it! My life hasn’t changed that much I just need to know my limitations and when I am tired to rest. We are all here to “talk” to if you need to. Ruth x x

Aww Em just give yourself time to cry and get your head around it. You know we are all here whenever you need us x

Hi Emma,

Sorry about the news, cry as much as you need to and then cry some more. I walked around in a daze for a good six months or so after dx, then one day it hit me.

You know where we all are

Take care

BeckyX

Hey, whatever you feel, its all ok to feel it. I woke in the middle of the night in April and had no power or sensation from the waist down, rushed to hospital and diagnosed within 2 weeks…i had figured out between MRI’s and for me, it was a relief that it wasn’t a tumour etc. It’s taken me a while to get walking again, have falled flat on my face a fair few times and some days are worse than others, but I am now back at work, am a nurse in a GP practice, i have a funny limp as I have foot drop but I was desperate to go back as needed the normality. I am starting my prescribing at university in September and I am determined it will not beat me.

What I am trying to say is, take a deep breath, take as much time as you need to get your head around it, take all the help your friends and family offer you to make the ‘simple’ everyday things easier and you will get through it. It’s an adjustment for sure but I tell you something, it has made me prioritise massively, I have to agree with Chubbster on this one, I am really living!!!

I have gone from tearing around trying to please everyone to taking my time and making more time for family and friends and less time for housework and all the things that can wait in life.

Take care of you and everything will work itself out, there may just be more bumps in the road, that’s all.

xx

emma

that is such a normal reaction

let it out!

i was expecting the dx and it really didnt bother me but 3 years later i found out that i SHOULD have cried, kicked the wall etc

you will be fine, you know that you’ll be fine but you will have to cry at some point.

do it now if this feels like the time

carole x

Thank you so much for your support and kind words. I am feeling a little stronger about it all (right now anyway) and can sometimes talk about it, other times I just wake up crying so who the hell knows what will happen, thats just the nature of the beast tho I guess, nobody knows what will happen to you.

Rachaelsmum TMI for anyone to take in after the shock of DX. Your post totally freaked me out, I was thinking I’m never gonna be able to have a holiday ever again. Maybe scale it back if you comment on any posts like this in the future.

Tricky123 I’m 29. Feel far to young to be dealing with such grown up stuff, i should be watching crap reality TV and planning my weekend drinking, not picking DMD’s and making sure I get early nights.

Anyway, I just wanted to say THANK YOU from the bottom of my heart to you all. Thank you for understanding and pulling me through those first few horrible days. I have some amazing friends and I’m slowly coming round to the fact that life goes on. I know I will be ok, I have no choice, none of us do. Xx

I know the feeling about thinking I am too young for it, symptoms started when I was 29 and was diagnosed when I was 33. My husband just says I’m a cheap date nowadays as one glass of wine and I am soundo, I try and laugh about it when I can but you can’t always. x

I am sorry you were freaked out by my post which was meant to be supportive and to show that although you may not know it yet there are people who get how upset you can get after getting a diagnosis. I understand that it was you that got the diagnosis and for my family it was my 16 year old daughter and not me so I can’t fully understand how it might feel. I was only trying to show that I get how life has changed for you, it may not be the same things that have changed but it is a changed life none the less. These forums as far as I was led to believe were for an open and frank discussion about how things had changed, how people felt and to hopefully get support for all the things that had happened since or leading up to diagnosis from people who had been there, done that and felt able to offer help, sympathy or just a listening ear. It is also a place for mutual exchanges of stories and reactions. As you can see from my post we are still going on holiday, it just takes a bit more preparation and thought, I don’t know how you took from that that you may not ever go on holiday again. I hope you get the support you need. Linda

Linda, I sent you a personal message. I didn’t mean to cause upset. I was coming from the place of just having been given the DX and it was the biggest punch in the gut ever. I was an emotional mess and it was too much for me to take in. It was too big in that very first instance and I just wanted to say that maybe the next person that comes along broken & in pain doesn’t need so much information right away.

That is all I was trying to say, I’m greatful that you reached out and hope that this experience does not stop you doing that. I am aware that we are both in pain right now and angry (well I sure am) Feelings and emotions are raw at the moment, lets not stop supporting eachother, at the end of the day thats what we all come here for and it’s what we are able to offer each other that those not touched by MS can not understand.

I hope you are alright and not upset by what I said, it came from an innocent place.

Emma

Hi Emma,

Hope you are getting over the shock, now.

Just one quick question - are you under the GWH?

Geoff

Hi Geoff,

Yes I’m under the GWH, Why?

Hi Emma, sent you a private message back. Linda

Emma

PM sent

Geoff