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Oh dear... we've got a diagnosis

Hi there,

I've been emailing for advice and info for some time now... and on Weds this week I took my 18 yr old daughter back to see the neurology consultant.  He confirmed that she does have MS.

The shock/grief/horror/disbelief are overwhelming - but beaten hands down by her fear.  She is absolutely terrified of what lies in store for her.  The consultant and the MS nurse were both massively reassuring, but she wasn't able to take any of that in.  It's heartbreaking to watch your child trying to come to terms with this.  That old cliche keeps coming back to me - that if only I could have this instead, I'd do it without a moment's hesitation.

Oh lord... well, I guess I'll be on here for some time, asking for more advice.  She doesn't want to sign up yet - she's scared she'll see something that will upset her (her biggest fear being any mention of bladder or bowel troubles!)

Thanks for the help and support you've given us already!

V

 

 

I'm sorry to read this ((big hugs to you and your daughter)))

I'm so sorry to read this. Of course you, and your daughter especially must feel devestated!! Please allow yourselves the time to feel the roller coater of emotions that MS diagnosis bring. 

She's such a young age to be going through all of this sh*t!! Any age is too young to be honest.

Give her time and yourself and when she is ready she will find lots of support on here... the 'young persons' link on the forum home page may be of some comfort to her in time.

Sending you many many big super duper hugs!

Mandymoo xx

p.s. dont forget to take care of yourself too 

Hi - I'm so so sorry your daughter has been diagnosed with MS at such a young age. I'm sure she and you will be shocked and stunned for quite a while. If she isn't already a member on here herself you should maybe guide her to the Young Persons section where she will find others of a similar age who she can sound off to and hopefully find support from.

Thinking of you lots xxx

Hi there,

I am so sorry that your daughter has had MS diagnosed. This will take a while for both of you to come to terms with. However, she does still have a wonderful life in front of her. She’ll still be able to fall in love, have children, travel the world etc. She will just have to make adjustments to accommodate MS into her life. I’m not saying it will be easy but this is not the end of her life!

Take everything slowly, on a day-to-day basis. A little at a time life will become more bearable.

Thinking of you both,

Teresa xx

Dear V, I am so sorry that this trouble has come to your door.  

I completely agree with the replies you have had - there's always someone to listen on here for you and, when she feels ready, for your daughter.

This is a horrible time for you, but don't despair.  It is bad, bad news that you have had, and no doubt, but life does go on, and your daughter will find her way through, as you will.

Thinking of you both.

Alison

So sorry to hear that your daughter has been dx with ms, it's certainly not an easy thing to take in and harder to accept. What you and your daughter need to remember is that each mser is different, what one gets another doesn't and visa versa. Life does go on with ms. I can understand you wishing it was you and not your daughter but what ever you do is don't blame yourself, as it's not. Once she has come to terms with things she may well find it comforting to come on here and let her feelings come flooding out. If she does we will listen and understand and help as much as we can. In the meantime sending (((((HUGS FOR YOU BOTH)))))

Janet

x   happyflower

 

Much love to u both.

As time goes on ,u  do get realise that things could be worse; be kind to yourselves.

x

Hello V

sorry you have had such a difficult time and a dreaded diagnosis. The diagnosis itself is much worse than what may or may not happen. Everyone understands what you and your daughter will be going through.

I would just like to reassure you both that no matter what she is worrying about it, it's unlikely to be like that.

Everyone is different. MS itself comes in various guises and people all experience different things.  There is a lot she can do proactively in diet and supplements and lifestyle. The other good news is her age. If there was ever a time for someone so young to get this diagnosis it's about now.

The race is on to get a resolution to this. There isn't a month goes by when they don't have a breakthrough. They will have the answer within your daughters lifetime, she has lots of hope and shouldnt despair.

In the meantime I would advise her to get George jelineks book or look up overcoming multiple sclerosis in google, he has a website. he recommends low saturated fat diet, primarily high strength vitamin D and omega 3.

Please feel free to let your daughter DM me with any questions. I know she is scared to come on here. I was terrified of seeing people with MS, I can laugh about it now.

Best Wishes x

 

Hi,
I’m so sorry that your daughter has had this news.

I’m 42 and it was a bitch to deal with I won’t lie.

When I was diagnosed I rang my best friend of over 20 years to tell her. We had started teaching together and shared a flat. Been through terrible boyfriends, weddings, kids, adoption and I thought life together.

I said I had some terrible news in very dramatic fashion and waited for a horrified response. I didn’t get it.

She had been diagnosed .23 years earlier and chose not to tell a soul!

I know it will seem like the end of the world for both you and your daughter and you need time to digest what’s happening, but please be assured that life goes on. I’m so sorry and send you both huge hugs,
Chis x

I read your post Anon and I cried...

I cried because i remember being 20yrs old when i had my first attack (well i know it was now) and being scared - petrified in fact and i never forget my mum saying to me, 'if only i could have this instead of you', that was nearly 20 yrs ago now! I was Dx only last week as they didnt know what was wrong with me when i was 20 and i recovered to full health after a few months and never looked back for years. Im 40 this year.

I can understand her fear, i always ran from it myself, and when shes ready she will face it.

I hope when shes ready she can find strength in sharing her feelings with others and have faith & hope in that fact that this doesnt mean the end of her life or dreams, she can do it and im sure you will be right there to help her succeed

Chelle x

Hi V 

I am so sorry your daughter has been given this diagnosis. It must be so scary for you all.

Paula xx

I’m so sorry about this. But I promise, she will come to terms with it. She has to live for the moment and not let it get in the way of living her life as she wants. I am currently suffering with my bladder and It’s annoying but not so bad! I’m just getting on with things. If she ever needs people to talk to then we are all here.

I would recommend that you treat her the same, but be understanding. My mum totally ignores it which is horrible buy It’s her way of coping. A 'how are you doing/feeling once in a while would be nice. Evening using the word MS to be honest as she’s in denial.

Xx

So sorry for this news for your daughter and yourself.

Wishing you strength.

(((BIG HUGS)))

Cathy

A wee bit of a different first thought from me: that I was so glad that you had a definite diagnosis!

From what you've said before, I can appreciate that your daughter is really terrified; probably more than most. There is a huge amount I could tell her about how it's actually far less scary in reality and that she can still have a very full and happy life, but the only way to really believe this is to learn and experience it, and that means time.

Knowing what it is means knowing what you're fighting. It also means getting access to the kind of meds that might prevent that biggest fear of hers from ever happening (if, indeed, it ever would anyway - nothing is certain). So while it's terrifying, getting this diagnosis is the first step in making sure that MS does not take over her life. And that life really can still be good. Very good!

Karen x

Hi V

As all the others have said, I to am really sorry for your daughter's diagnosis.

I am 33 and in limboland but I too am extremely close with my Mum so your post brought tears to my eyes as I know that my Mum feels the same as you and would rather she could have it instead of me.  The thing is that I wouldn't wish this on my Mum or my worst enemy, and I am sure your daughter will feel the same.  For me, although I am not diagnosed (the Neuro strongly suspects MS just got to wait 3 months for further tests) after the first month of crying I have actually found it harder to deal with as it is happening to me.  Not sure if this makes sense to anyone but I would find it even more heartbreaking if my Mum, Dad, Brother, Husband or children were diagnosed with it.

I know this doesn't help but wanted to share with you my point of view from a daughters side.

Sending lots and lots of hugs

Emma xx

Sorry to hear of your daughters diagnosis, but at least you know what it is so are not in limbo-land!

You sound like a very caring mother and your daughter is lucky to have you, you will be her shoulder and when she is ready to open up and come to terms with things i know you will be there for her.

Thinking of you

J

x

I'm so sorry to hear about your daughters diagnosis. I can't imagine what you or your daughter must be going through. I turned 29 this year and my symptoms started last year and I'm undiagnosed so your daughter being so young she must feel like all of a sudden there are all these obstacles that other 20 year olds don't have to face.

Be there to support and comfort her. It will take time and adjustment coming to terms with it but as Rizzo said many people do go on to live happy, fulfilled lives.

Even though it might not seem like it now - getting a diagnosis is good. There are so many people on these forums that have had symptoms some from a similar age as your daughter and not got diagnosed or help. At least  she can try to get the help she needs now - MS won't go away but she can certainly get help improve her chances of living the life she's dreamed of.

Hugs to you and your daughter

Reemz

X

 

I'm so sorry to hear about your daughters diagnosis. I can't imagine what you or your daughter must be going through. I turned 29 this year and my symptoms started last year and I'm undiagnosed so your daughter being so young she must feel like all of a sudden there are all these obstacles that other 20 year olds don't have to face.

Be there to support and comfort her. It will take time and adjustment coming to terms with it but as Rizzo said many people do go on to live happy, fulfilled lives.

Even though it might not seem like it now - getting a diagnosis is good. There are so many people on these forums that have had symptoms some from a similar age as your daughter and not got diagnosed or help. At least  she can try to get the help she needs now - MS won't go away but she can certainly get help improve her chances of living the life she's dreamed of.

Hugs to you and your daughter

Reemz

X

 

I'm new to the forum - but just wanted to send (through the tears) a big hug to you and your daughter.  As Karen says, a diagnosis is good - it means you know what you are dealing with and means you can access the help that's available.  It won't be easy - but it sounds like your daughter has a great Mum to support her through this, whatever the future holds. 

Hazel