Last reply 1 year ago
My long wait is finally over

Hi everyone,
I have just had the phone call from my neuro following my MRI test, evoked potential test and lumbar puncture(horrible!) last Wednesday. He has confirmed that I do unfortunately have ms ? I have spent the last hour following the call today crying and I need advise is it normal to be this upset? I like to think of myself as a strong person but this has hit me hard. My mind is swirling with everything he said to me and I don’t know what to do or how to feel about this.
Love @feeblefee ?

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naomih
1 year ago

Hi @feeblefee. It’s ok to let it break you for a while. The diagnosis makes every option in your life seem different. But….you will get through this, stronger and better. Big hugs to you. πŸ™‚


feeblefee
1 year ago

Thankyou @naomih for the hugs I needed them ????


sonia1984
1 year ago

@feeblefee It’s completely normal to be upset. I have officially been diagnosed for over a year, symptoms for 16 years and still have little bouts of sadness. Try not to forget that even with an Ms diagnosis you are still you. Don’t feel bad about reaching out for support whether someone to talk to or medication wise. You might have to reinvent yourself as time goes on but you will reinvent yourself for the better. Your life is not over don’t lose sight of that. Positive vibes sent your way on your Ms journey.


feeblefee
1 year ago

Thanks @sonia1984
Everything you’re saying makes perfect sense and they’ve helped to ease my emotions so thankyou very much ??


doubleo7hud
1 year ago

Ey ups feeblefee I’m just waiting for my results there due in on Monday I hope when I go see the neuro if they can’t find owt it’s the needle in the spine for me yayyy. Anyway get thas chin up lass iv had a reet shitter tbh I got a list of things It could be from the docs at the start and ms was the best off the list I’m happy as a pig in its own poo it’s heading that way and nearly all the nastys have been ruled out. I get to see my baby’s grow up could not ask for anything more than that. Stay strong be positive, plan for the future and laugh lots.


jessvf14
1 year ago

Aww! I remember. Took me 6 years to get my diagnosis so I was definitely expecting it but I still cried and got on a downer. A year on it’s like it never happened. I take drugs but I’m used to them now. I have a beautiful toddler and a hubby that for a while felt the need to show me life isn’t over- took me in a ton of adventure weekends to show me I can still do things. Not that I ever wanted to do those things before my diagnosis- I certainly don’t want to now ha ha! A colleague asked me if it’s changed my outlook and if I’d made a bucket list, to which I responded that I’m not dying! It’s not going to kill me I just need to adapt if things start progressing. Things that bothered me were having to give up my driving license for a 3 year medical review, and the withdrawal of my car insurance (not discrimination though, because it’s not the deal they agreed to at the start of my term- they would have withdrawn it if I’d changed the address or car because they weren’t the same, even though I’ve moved address twice and changed car half a dozen times and never had it withdrawn! In other words bulls**t). Oh and having to tick the box that asks if you have a medical condition. They annoy me because I like to ignore it and they remind you of it. It doesn’t define who we are and we gain a lot of respect from people when they find out we have it yet fight it whilst getting on with life. It may not seem it now but you really will feel differently once you’ve had time for it all to sink in x


spunky
1 year ago

I know exactly where you are coming from @feeblefee. I found out about a year ago and almost no day goes by without me thinking about it even though I haven’t shown any symptoms in over a year and have only had one clinical episode. I take my Aubagio each day (no more side effects after my hair fell out for 3 months) and I have kept up my exact same routine with working full time, taking care of my kids and going to the gym. I know I am being naΓ―ve in saying this but hope everything stays this way forever. I just try to take each day as it comes. Best wishes!


marcyg921
1 year ago

Perfectly normal to feel upset, this is huge and life changing, it took me a year a year but I had a feeling I had MS for months prior to getting the official diagnosis, didn’t make it any easier and not a day goes by that I don’t think about it, just remember, this is a battle that you don’t need to fight alone, this forum is great if you have any questions or just want to get something off your chest


Anonymous
1 year ago

@feeblefee – I second everything everybody else has been saying here. Got my diagnosis last September and am still sometimes crying, it’s a life changing diagnosis. First relapse after diagnosis really got me, emotionally more than physically. Gotta plot on, it’s a total whopper to come to terms with but we all eventually do (not that we have a choice). xx


feeblefee
1 year ago

Hi everyone, well it’s 4:32am not slept much ? but reading all your lovely comments have made me feel better ?I know I will be fine and carry on as normal it’s just as you all say it takes a while to come to terms. I’m really worried about telling my gran tho, she’s 87 sharp as a tac and tbh were best friends ?. She knows I’m waiting on the call from the neuro but I don’t know how to tell her. I don’t know know whether to just say everything came back fine so to not worry or stress her. When I told her they suspected ms she waited until I left then cried for an hour? any advice? Love fee xxxx


doubleo7hud
1 year ago

@feeblefee it’s a tough one that try getting some sleep first the more tired you get the worse you will feel the old cogs need some rest that’s most important thing. Just be open and honest with your gran but before you tell her make sure your ok first. Get your head right I think iv told nearly everyone I could possibly tell that’s asked what’s wrong with me I might have MS as I got bored of telling people I dropped my wallet on my foot before Christmas, or was nakid snowboarding down the stairs on New Year’s Eve. For what ever reason the last one no one really blinked a eyelid no idea why he he. Anyway as said before you need to retrain your brain into being positive your life’s not over it’s a new beginning a fresh start just simple changes will make all the difference. For me being a simpleton helps a lot he he I tend to not overthink things and just crack on with a shit eating grin and a little whistle.


Anonymous
1 year ago

@feeblefee – perfectly normal reaction
but at least you posted on here about 10 years before I got around to it, well done
you are not alone & however strong you thought you were, you will end up even stronger than you ever imagined possible. Dig in during the dark moments & if need anything – ask this lot, they are brilliant at grounding you with lived experiences, sound advice & humour.


lucyh
1 year ago

Hi @feeblefee

Try to get in with a group of MS-ers (younger ones if you are young)… you might need to be with people who really know how you feel.

As for your grandmother…I do know how you feel…I still have not told my parents (and I’m married with kids!). I have enough to take on without taking on someone else’s sorrow; I guess it depends on your grandmother’s personality (plus she might know you are not telling the truth if you say you are fine). My own mother would, as a friend said, hijack the whole thing!!

Take care, best wishes, lucyh xx


feeblefee
1 year ago

Thankyou everyone for all your lovely comments ?as for my wee granny I went to visit her I didn’t even get up the stairs and she said “what’s wrong?, I can tell” shes so good at that lol so I told her she did cry but she said she had been expecting me to say that I had ms so she wasn’t too bad as for my dad I got my first hug in ages lol I will take all your comments and advice on board and really I cannot thank you all enough ?


tracyd
1 year ago

@feeblefee ….. oh sweetie, it’s perfectly normal, there’s a whole loop of ‘normal’ we go through,

– the breaking into a thousand pieces
– the denying you’re in a thousand pieces
– the trying to put the pieces back together again,
– the getting mad as hell because because there a pieces missing and it doesn’t go perfectly together again

There’s nothing good about finding out you have ‘IT’ – ‘IT’ might explain all the wierd stuff that led up to diagnosis but what happens next with ‘IT’ is fortunately (might seem like an odd word to use) is something you can do something about – there are amazing new treatments available and more new ones in the pipeline – the future is no longer a guaranteed unchecked ‘progression’ of the disease

Your Gran loves you, she’s concerned for your wellbeing and future, everyone knows someone who knows someone with a terrible tale of MS and in all honesty it’s still a bit of a taboo subject in society. She knows it is a possibility, and you need to talk to her about it at a time when you’re ready to do to – the gate is open the horse is already out and it’s just a question of how far it’s going to run now.

There’s another stage you can go through nowadays with ‘IT’ …… there’s going to war against it, beating the crap out of it, it’s YOUR immune system and YOU’RE in charge of it and quite frankly MS can ‘do one’ ….

You have a friend request, I’m happy to share contact details if you need someone to talk to in order to get your head around all this, or just if you need someone to yell at because it’s so shitty.


velvet
1 year ago

As others have said it is completely normal to be upset.
I was sure I had MS and completely expecting the diagnosis. I was staying strong and positive, looking into ways to manage it, talking to others with MS, etc… yet when I finally got the diagnosis somehow it really shocked me.
All that positivity and strength and determination I’d mustered up beforehand melted away and I broke for a little while.

One of the things which helped me most was what my mum said to me after my diagnosis. “The only thing that’s changed is you now know more about yourself, which is a good thing.”

It’s ok to get upset, it’s normal, we’ve all been there. Give yourself time to let everything sink in.
Now you know what’s wrong you can start to manage the condition and eventually things will settle down and it won’t be constantly on your mind.


Anonymous
1 year ago

late night so had time to read all the above posts

I have to say people – that was a bloody marvelous set of reponses
we have really great community on here

Thank you all


feeblefee
1 year ago

Everyone here is beyond amazing, I can’t thank you all enough, you’re all holding me up when I’m not strong enough right now. Thankyou for all the love, advise and friend requests ? I cannot say thank you enough!


Anonymous
1 year ago

one day you’ll want to change your name from Feeblefee to FightingFee


breezy19
1 year ago

Hi @feeblefee, just wanted to add my voice to the chorus. January 25th was the one-year anniversary of me getting my diagnosis. I remember all those emotions like it was yesterday!! Your perspective on everything will shift, in both good and bad ways, and you discover how much those around you love and care for you. As long as you have your supports around you, you will get through these tough early stages ?


feeblefee
1 year ago

@tog1
Good idea a name change is in order ? I got that nick name from my big bro years ago lol because of my weak upper body strength ? and it’s stuck with me
@breezy19 well we share the same diagnosis date ?thanks for all the support


tracyd
1 year ago

FearlessFee …. go kick your brother up the arse and tell him you’re about to show him just how fearless you are πŸ™‚ and that you hope he’s strong enough to hang on to your coat tails during the ride πŸ™‚ xxx


feeblefee
1 year ago

@tracyd
I think I’ll do just that? ur so lovely thankyou ?


doubleo7hud
1 year ago

He he he I have same problem with my older a hell of a lot balder, smaller, and not as good looking brother I just remind of that fact and he soon shuts his cake hoyal (hole) bless him

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