Forum

Just been diagnosed

Hi everyone hope your all well.

Earlier this year I posed on here about not knowing. I went back to the Neurologist on Thursday and he told me that I have MS I dont know what type yet but I have to go back in 6 weeks to see him and discuss treatment.

I was sort of expecting it as me and mum have suspected for years, but its different thinking it and knowing it. My mum just says dont be silly you knew anyway. And my friend is too busy to even ask me how I am. I have one other friend who has been brilliant. Im just scared now. I know its not a death sentence and i will probably lead a normal life but I dont deal with not knowing things well. I have to know everything. One good thing is I dont have to have a Lumbar Puncture which im so happy about lol.

Sorry if this is a bit all over the place just a little bit all over the place but I was just wondering how other people delt with it.

Thankyou and take care and Merry Christmas xxx

Hi, I’m sure you must be feeling very dazed at the moment with lots of questions you want answered. You have a few weeks before your Neuro appointment so it’d be good if you wrote them down as you think of them, also make a note of any symptoms you have, or may get, before the appointment.

Even if you’ve already suspected MS, it’s still a shock when it’s confirmed. Take things slowly & give yourself time to absorb the new knowledge. That friend who is ‘too busy’ for you…well maybe they’re not much of a pal anyway. True friends are worth their weight in gold & it sounds as if your second friend is really good.

Your Neuro will probably want to discuss starting you on DMD’s that could slow the progression of your MS.

Good luck & try not to worry.

Rosina x

Thanyou Rosina for the reply. Its nice to know there are others out there who know what i mean.

The idea about writing things down as they come to me is a brilliant idea im going to do that. I think i do just need time it took me ages when i found out the docs suspected it nearly 7 years ago. Its taken this long to finally get a diagnosis so im a little bit relieved im not going mad and its not all in my head.

Thankyou again

Take care

Tasha x

So true. Isn’t it odd how that works? And it’s not silly, by the way, and I am sure that your mum is feeling no better than you are, even though she is doing what mums do and trying to reassure you (and herself!) that you knew anyway, so it’s no big deal. Diagnosis is hard for the person directly concerned and it is also hard for those who love them most. I really feel for you both.

It is tough news to deal with, and it is normal for people to feel a bit all over the place emotionally - maybe for quite a while. That’s OK. It is not a matter of ‘dealing well’ or ‘dealing badly’ with the news: whatever you do and however you feel will be the best way for you. So please just go with the flow and don’t be hard on yourself if you feel a bit out of control or all those strong emotions that are swirling about. Most people find the first few months pretty rough, emotionally - no one really takes this kind of thing in her stride. That applies even when the actual dx is just a confirmation rather than a surprise, I think. But you will get through this difficult time and reach calmer waters - please hang on to that thought.

Good luck.

Alison

Hi Tasha

One thing you will find about this site is that there are a lot of people who care.
Some of us have been there before (wherever “there” is).
There will always be someone who can help (most of us are experts on something).

Like Alison saya - just hang on!

Geoff

I just want to say thank you to all of you on this site, i have followed you all for so long cried with you, and been amazed by your courage it has really helped me, I am at the beginning the journey. i wasn’t well at the end of 2010 was admitted to hospital for tests but later told it was caused by stress, i got better but never completely i was left very fatigued and also with a tremor and double vision, then in May 2013 two weeks after a minor operation i collapsed and loss my mobility this time i needed a wheelchair and carer’s and adaptations to my home, i am so much better than i was but I still need a wheelchair and can no longer drive and have so little energy and need carers to help me. I am 49 and have children that need me, my 13 year old daughter is Autistic and my youngest daughter is 11 and have a son of 18 with Aspergers syndrome. So far after tests the doctors still say stress, i am not convinced at all i feel as if iv’e been labelled with mental health issues. On a positive note I bought a power wheelchair in March and i have just been trained with an assistance dog by Canine partners in November. i have now got a gorgeous golden retriever called Frazer and for the first time in ages i have some independence. Thank you for reading this.

Hi thankyou so much for your message it ment alot.

I sometimes feel ok and even positive as in I have stopped eating all the junk food I used to im eating healthily lots of fruit and veg. I do still pig out occasionally lol. Then I get day when its all too much, but the thought about getting through this and reaching calmer waters is a great one. Its helped alot

Thankyou agin. Take Care

Tasha

Hi Geoff thankyou for your message.

I am definately finding out that people on this site care and your right alot of people have been through getting diagnosed so they know what its like. And its nice to know im not the only one feeling like this

Thankyou Take Care

Tasha