Iv just been reading some of the posts on here and thought I’d write one, well I am 22 years old, and it all started in april this year, but it took them until august to even get me in with a ms specialist, at first when I was waiting to be diagnosed I was looking up all sorts cancer, brain tumours etc. I got told just a couple of weeks ago that they think it is primary progressive ms and I really dont know what to do I have never been so scared in all my life I push every one away from me cause I cant deal with it. I am in so much pain and none of the medication that I am on helps, I can hardly walk I can hardly do anything for myself. I am so scared as I dont know what the future holds for me or how fast it will progress, all I know is that I cant cope any longer feeling like this. I have told my GP this a million times but she just doesnt seem interested in helping. I amdue to get married on 26th nov this year and I can hardly walk and alot of the people that are coming dont know that I have MS so I am dreading them asking whats wrong and I am dreading walking up the aisle when it will be all eyes on me. It is so hard to come to terms with everything.
Hi Sherrie, oh you poor love… what a hell of a time you’ve been having.
You are so young to be getting dx of MS… so first of all, wait and see. It might not be PPMS. I might be RRMS and you are having first bad relapse. Secondly, IF it is PPMS it doesn’t mean it will stay as bad as it is now. Even with PPMS things go up and down and with physiotherapy things can improve. So this is a very hard thing to say, but you have to wait and see.
You do not mention you fiance Sherrie, and how he is feeling about the wedding in November. Now you can tell me to buzz off if you like but it occurs to me that getting married is THE most stressful thing in a girl’s life… and as you have probably noticed by now, stress and MS are a really really bad combo. I’m wondering if you’ve had a talk with your fiance about all this. How would you both feel if you delayed the wedding for a while? NOT because you will not get married, or should not get married (God forbid!) but because the stress at this time in your life is too much. When you walk down that isle you should do it with your head held high and loving every single moment of it, not worrying about friends who don’t know you have MS and dreading the questions they will ask you.
Have you both spoken about it and maybe delaying things for a while? Live together but delay the ‘big day’ until you are feeling happier and more confident… which, Sherrie you have to trust me on this, you WILL DO.
It takes ages to get your head round and MS dx at any age, but even harder at your age. You need about a year to start to deal with how you feel about it, get used to it, tell friends and let them get used to it, learn about your own MS (cos as you know it is really very different for everyone) AND THEN you can spend your time planning your lovely wedding day and look forward to walking down the isle.
Getting back to your fiance, have you spoken to him about your feeling about having MS and how frightened you are? This is the man you intend to spend the rest of your life with (and that’s a very long time) so you need to start off as you mean to go on, and that’s by talking about your feelings together so you can support each other.
Keep us posted with how things go for you honey. It is very very hard to deal with at first, but life does go on and once you get used to it it’s much much easier and not nearly so scary.
I know you’re are scared but hang in there. The docs say they think it’s ppms but you need to wait until they are sure .22 is young for ppms and I would agree with the others that it could a bad relapse of rrms. If that’s the case the damage could be temporary and you might be walking perfectly by the time you get married. As Sharon and Pat say, you will adjust to it and it will not seem as scary when you do.
Your family and real friends and of course your fiance are the people who will help you manage your life and adjust to living with ms. There is NO substitute for them, so it’s really important not to push them away. They are the people who will get you through these horrible days, but ms is not always terrible days and terrible pain. There will still be good days ahead. We are all diagnosed and we all have the pain and the moose walk and the foggy bottom days etc but we’re all still here chatting away on a Sunday morning so that must tell you that every day won’t be as overwhelming as it feels now.
Good luck on your wedding day ( I got married without the whole walking down the aisle thing it’s your wedding after all ) As for telling other people about it, I even tell strangers in the street if they stare too much. Sod it! you didn’t choose this, why worry about what other people are going to think.
I wish you the best and we are always checking in on the forum if you have specific questions. You’ll have a great wedding wait and see!!
Thanks for the replies, I shall phone the ms line some time this week although I dont know what I will say to them. My wedding has been the only thing that has kept me going through this, I would love it not to be primary progressive, does any one actually know how long a relapse lasts? as I have had my symptoms since April and none of the symptoms seem to be getting any better just worse and some are staying the same.
Hi Sherrie again. As far as I am aware, you dont get relapses with PPMS...I know this isnt what you want to hear love, but hasn`t anyone else told you this?
I`ve had PPMS for 14 yrs and it is quite different to other types of MS, I think.