Hi there; I’m Dy (Dyantha). I was pointed in this direction via the MS Facebook page.
Five weeks ago today I was told I have RRMS. Looking back on past episodes this began for me when I was about 34 (I turned 40 in August).
Since being diagnosed I have had no contact with anyone medical, even though I was promised another follow-up appointment and contact from an MS nurse. I feel like I’ve been ‘dumped’ for lack of a better word.
I’m very emotional right now regarding the whole thing. My neurologist told me there was no need to be pessimistic about it but the way things are at the moment I feel everything but optimistic! I have researched the best I can to learn more and so as not to scare the wits outta myself I felt an official MS Society place would be the best way to continue.
I’ve been sifting through the forums but have a long way to go yet…lol.
Anyway I just thought I’d introduce myself (hope it’s in the right place!).
You will get a huge amount of support from the lovely people on here. We are all there for eachother when anyone needs to offload or ask any questions. There are a lot of people on here with a lot of information to help during the low times. Also, we like to share jokes so we have a good laugh too!!
I was diagnosed 9 years ago in February and have been a member of this site since then. I have made a lot of friends on here and I am sure you will too.
Hi Dy & welcome Well you’ve certainley come to the right place, like Shazzie says there’s always someone there to give you a lift when your down, and advice on any ms issues you may have, the people on here won’t let you down whatever your problem. Sue x
I’m fairly new on here too but have had loads of lovely comments from ‘the regulars’ who are wonderfully friendly and helpful. I’m RRMS too, diagnosed in 2010 but reckon I’ve had it for 30 years as I was in my early twenties when I first had (undiagnosed) symptoms (Oooops, have I given my age away?!).
So sorry to hear you are feeling low at the moment and hope you perk up soon.
Hi Dy, welcome and please only stay on proper MS sites. When my daughter was diagnosed earlier this year I went on every site I found with the word MS in it and scared the bejesus out of myself. The good people on here put me right and talked me out of always researching on scare sites which did me no good and lead to a lot of sleepless nights and tears. L x
Welcome to the site Dy-this is a great place to get info/advice from people who know exactly how MS affects individuals. I was dx 17 years ago with RRMS and still doing pretty well-yes my right leg doesn’t work as well as I would like it to but I still work,drive,etc…It’s pretty scary when you are first diagnosed , I can remember shedding lots of tears thinking what was my life going to be like in the future and there were very few meds available then for MS. But I have been fairly lucky in that I have had very few big relapses since diagnosis-indeed some of my friends/colleagues are not aware that I have MS. Maybe you could ask your GP to find out who the MS nurse is that serves your area-they should have that info and then you get in touch with them or phone the hospital where you were dx and ask who the MS nurse is. Try not to worry too much(easier said than done) and if there is anything you want to know ask on the forum-they is always someone who will be able to answer. Take care Cathy x
Welcome this site is full of wonderful people that really make you feel you are not on your own. I consider this people my friends. I was dx in jan this year and I find the people on here understand what you are feeling. Barney
I’ll just echo all the others and say welcome. You will soon find out that on this site its a case of been there and done that.
And your doctor is right to tell you not to get pessimistic. I have had this disease 12 years, never had to take medication and still go to the gym. I realise I am very lucky and a neurologist told me recently (first appointment since diagnosis) that I am in the top 5% of sufferers. Thats better than winning the lottery.
There is a wide range of symptoms and the outcome is different or different people. There is no way of knowing how yours will progress.
So take heart and no doubt we will all talk to you later
Oh wow! Thank you all so very much for the warm welcome; I feel better already!
I’m due to see my GP next Thursday and I’ll definitely be having a stern word or three with him about it all.
What amazes me, after reading quite a few threads already, is the difference of MS for every individual.
My experience so far… In 2007 I had ‘pins and needles’ sensations in my left little finger. During the course of the weekend it had spread to the whole of my arm, neck and across my chest with tingles all the way to my knees. This eased over the next month and was book in for a brain and cervical spine scan. Three months later my neurologist suggested it may be a virus that’s left scarring ergo nerve pressure/damage. This left me with numbing to the left side of my left hand.
In March of this year I began with the same tingles down my legs but this time right down to my toes. In fact at one point my feet and low leg felt quite numb. Walking was ‘weird’ and I struggled, mentally as well as physically, to walk DOWN, whether it was a flight of stairs/steps or just a hill. I thought I was going to go flat on my face! Feeling so out of control at this point was difficult to deal with, only someone who has experienced this, or similar, would understand wouldn’t they? My arms were weakened (hanging the washing was very tiresome) as were my hands. My hands haven’t fully recovered (yet?), they feel ‘sleepy’ and my index fingers and thumbs have even less feeling in them. It’s been 9 months since this ‘relapse’ and because there is no black and white answer I’m reall, really hoping I get more feeling back in them! Overall this time I feel ‘zapped’!
Anyway, there’s a little of my experience with MS so far. Thank you all again for such a lovely, helpful welcome. I look forward to getting to know you all.
Glad you found us. I sometimes join in on FB but find it a bit too ‘public’ for my liking. When I’m discussing the random things my body does to me (especially the more embarrassing stuff ) I’d rather do it with a bit of anonymity.
As the others have said, we do our best to support each other because as you have already discovered the only ones who really understand are the people who have experienced the same things. No-one’s MS is exactly the same but on here there is nearly always someone who has had the same or similar symptoms and has found a way to ease them.
Sometimes we just gossip or share jokes, family news etc. Hope to chat to you again soon and I’ll keep my fingers crossed that you get the support of an MS nurse soon. It really is a postcode lottery as to how good the professional support is.
