Literally got my diagnosis less than an hour ago and although I’m pleased as it was inevitable, I also feel weird!
He said had I not have told him about my second attack/relapse then he would have diagnosed but just left it but as I’ve told him of the second incident he’s referring me to the MS specialist for DMDs and to the MS nurse.
I don’t really want to be on lifelong medication, I don’t take anything at all at the moment but I guess if it’s that or disability/blindness then so be it.
Actually not sure how I feel now but thanks for all the advice given. x
Hi, well, now you know what you are dealing with, perhaps you do feel a little settled…or whatever…cant find the right word to use…but I get what you mean.
As it was only today you got the news, there may be a time when you suddenly have a wobble. Being told you actually do have MS is a mammoth thing to digest.
How long have you thought you might have MS? But there is a huge divide between the 2 states, eh?
I`m glad you are being referred to an MS specialist and an MS nurse.
If more questions crop up before you see them, and I`m sure they will, jot them down on paper, as you may forget when your appointments come through.
Thank you. All this started with an intensely itchy forehead mid-January this year and I thought I had shingles but then my face dropped 3 weeks later and my left leg become weak, then came the MRIs, CT scan, etc so I was expecting it.
I just feel a bit overwhelmed but I have already been through some low periods especially when I had the second attack as I realised that this was almost definitely MS.
Now selfishly praying that I can claim on the Critical Illness insurance although I feel sure there will be some reason I don’t qualify.
Thanks for all your support over the past (nearly) 6 months - it’s been a bizarre old time! x
Hi just wanted to say sorry about your dx, but i’m glad you have at least got some answers. It’s a strange feeling having your suspicions confirmed, but at least now you can look to the future rather than staying in limbo. I imagine your feelings about it all will fluctuate up and down for a while so try not to be hard on yourself, take as long as you need to take stock and re-assess, everyone reacts differently. Good luck and best wishes, Laura x
Glad you got an answer, albeit not exactly one any of us really want
Excellent news about the DMDs and MS nurse. Whatever you decide about DMDs, it’s always nice to have the option! And nothing ventured, nothing gained…
Even though you were expecting it, it’s likely to hit you like a ton of bricks any time soon so take it easy, don’t be too hard on yourself and don’t bottle it up. One day at a time.
I just logged on to see how you got on today, I’m not one for saying sorry in these sorts of scenarios as I hate it when i get that look from others, you know the one where they tilt their head to the side and give those puppy dog eyes “I’m so sorry to hear that” comes out of their mouth and you just feel as though they are pitying you (that makes me sound like such a bi@ch, I’m not really) so I am going to say it isn’t the news you wanted to hear but we have all been through the same thing and know exactly how you are feeling, big virtual hugs to you. I was only diagnosed in January and whilst I was fairly certain I would get the MS diagnosis it still hit me with a sledgehammer when she actually uttered the words. Take your time in coming to terms with it all I am still tearful about it now. I started DMDs a month ago and my thought was that if it helps to slow the progression I can then live as normally as possible for longer, i had a complete melt down on my last relapse and was a blubbering wreck because I couldn’t walk properly or pick my daughter up. Avonex is only a once a week injection and Copaxone is daily, the msdecisions website is really good and the MS nurse appointment is also valuable to glean additional information about your treatment options. Keep us updated x x
oooh internet gremlins didn’t post my reply! grrrrr was slightly more longwinded than this but agree with Rizzo, I expected my diagnosis and still felt as though i had been hit with a sledgehammer, that was 6 months ago and i still get tearful about it now. Have recently started DMD’s so happy to answer any concerns you may have about injecting for the first time, I’m on Avonex which is weekly. Virtual hugs from me x
sorry to hear your news. im sure alth o ugh you’ve tried to prepare yourself its still alot to take in. But how I’m trying to look at it is if ive got it me knowing or not knowing doesnt change that, but having a dx means I could at aleast get some help with walking and other symptoms. So heres to you getting s ome well deserved help hun.
