Hi, diagnosed today!

New diagnosis and before diagnosis
1

Syptoms started on 1 January this year, when I got out of bed and fell over, until then not even the slightest inkling that anything was up. Since then I’ve “had”, according to various doctors, a viral ear infection, vertigo, a stroke, irregular heartbeat, high blood pressure…the list goes on and on.

Finally today an appointment with a neurologist, and 45 minutes later my life changed. I feel shocked (although deep down I knew what it was 8 months ago) but i also feel relief that at least i finally know what it is, well i finally had it confirmed anyway. i’m now waiting on an appointment with an ms specialist.

in the meantime this is all new to me and i wondered how you “old hands” deal with the everyday things. also can you guys tell me if i can expect to receive any sort of help? i had to leave my job in march, i was in aviation security, i was one of those annoying people who go through your bag, search you as you come through the archway and go beep (even when you’re sure you haven’t got any metal on you, and by the way sometimes you haven’t, the machine beeps random passengers sometimes) and i’ve seen what the screen on the x-ray looks like, but i had to leave all that when getting up without falling down, after searching someone became a rarity.

anyway i’m off to do some more getting used to the idea that i finally know what it is and i don’t like it

2

a thought has occured to me,(sorry to be the first to post on my own thread), what is the likelihood of passing ms genetically, or does it just give you more of predispostion to it? i only ask because i have an 18 month year old son, who god help him, may well have just been cloned from me, and another baby on the way (sex as yet unknown, 30/9 for that)

boo x

3

Boo,

I am one of the lucky ones, and to be honest feel a bit of a fraud when here stories like yours. I first had symptoms 18 years ago, none of which has been as bad as yours, but it was finally diagnosed at the begining of september. All I can do is wish you all the luck in the world, I am new to this also, but like you, I knew. I can never understand why the medical proffesion are so reluctant to diagnose this, it is what it is, just tell us and let us deal with it. Are the other possibilities they mentioned to you easier to come toi terms with, a stroke?? With a youg family can I be so bold as to assume you are not that old. Is telling someone they may have had a stroke better than ms, I would rather have niether but just tell me. Not much help I am afraid, just taking the opportunity to vent my spleen!!

Stay well and good luck.

4

i’m actually 45, children happened late, i was going through a bad time in my life, depression etc (was prescribed prozac, didn’t like the way they made me feel and weaned myself off them, in the end the best thing i did was stop taking them, it gave me a clear enough head to deal with the depression) and “ended up” in a relationship, the end result of which was a beautiful boy and one as yet undetermined, although that relationship is currently “on hold”, as she told me before my last appointment with the consultant i first saw, the stroke specialist, that if i was going to end up in a wheelchair, she couldn’t cope with that and i would be better off with my mum and dad (who are 70 and 69!) as they could look after me better! i am currently trying to work things out but…

is a diagnosis of a stroke easier to come to terms with? to be honest i don’t know, because not once in the last 9 months, even when my gp said he thought i had, did i even think i’d had a stroke, so never considered it as an outcome. the thing that was throwing me was that apart from the dizziness and occasional lack of muscle control, and which has got worse since july, i had, and still don’t have, any other symptoms. no pain, no loss of vision, nothing, but something just kept nagging at me that what i had was ms, finally confirmed in part by an mri scan the end of july and by the neurologist today (or yesterday as it is now)

i’ve been partly in denial about it, feeling you’ve got it, but not being told you have, gives you the opportunity to convince yourself that you’re wrong, so i know very little about it, because when you do read something (cough wikipedia) it becomes a bit scary. even when walking anywhere without having to think out your steps first and concentrate like fu…, concentrate really hard becomes too hard, and attempting to use a stick makes it worse due to your arm shaking like crazy and making you more unstable, so that in the end you use crutches just to get from a-b albeit really slowly, you tend in your mind to tell yourself there’s another reason for it and the doctor’s going to say “take these and you’ll be as right as rain in a week”. but now i know, well now i can admit it to myself anyway, and now i’m kind of stuck here not really knowing what way to turn and what to expect.

and as for your post, it was a lot of help because it’s all too easy to feel like you’re the only one in the world going through this, and a little reminder that you’re not alone really helps. so thanks. also spleens do need to be vented sometimes and where better to do it than somewhere where the people reading it look at it and go, “i may not know your name but i know what you mean!”

peace bro (or sis, i’m not sure which :wink: ), stay well

boo

5

I am sorry you have joined the club that no one wants to be in. There is a lot of excellent information on the main part of this MS Society site - it is reliable and good. I would suggest that that is the best place to start to get your bearings in this strange new situation you find yourself in. (There’s stuff on there about MS and the role of genes, BTW - having a parent with MS increases only very slightly the risk of a person getting it, so there’s good reassurance on that.)

It is a strange time, this just having found out for sure business. You describe it so well, and you have taken me straight back to my own experience of diagnosis, how part of you knows perfectly well which way the wind is blowing, but another part of you thinks that is just ridiculous and out of the question. If things feel a bit topsy-turvy for a bit, please don’t worry. Stuff settles into place over time, or it does a bit, anyway. I am very sorry that there is upheaval in your personal relationships to deal with too. That is very tough. This kind of thing is difficult for the people around us too. Sometimes nearest and dearest panic, and think they can’t cope. That doesn’t always last - other people have to get over their stress responses to worrying news as well, and calmer reflection can draw out a different and more supportive response. I do hope so.

Good luck with it all.

Alison

x

6

Hi Boo, Welcome to the site and I’m sorry about your dx. I was dx in March so the feeling is very familiar, at that time I couldn’t walk and suffered from terrible double/no vision. I thought my life was over. I was given a course of steroids which took me out of my relapse. I know that you’re scared about the future and I’m so sorry that you don’t have a supportive partner, but I can tell you that things will get better. Ms is a very personal desease. It affects each person in their own way and only you will know how you are affected. We learn to adapt and manage. I know that sounds a bit patronising but it’s true. There are things I don’t do any more, like running, but I do Tai Chi now instead. My kids are older than your, 8 and 9 but they too adapt. It takes a while to get used to. There are some practical things that you now need to take care of. You need to inform the DVLA is you drive. They put ms on the medical sects of your paper licence. You also need to tell your insurers as they also put it on the policy but by law can not charge you more! If you own your own house or have any critical illness insurance policies, you need to claim now. Ms is a payable condition and it’s a straightforward process to make a claim. Finally I would suggest you make a call into your local ms society branch. They are very good at letting you know what help. Is available and also help with filling in forms they also have councillors that you can be referred to if you feel you need it. I ran a mile when I saw the wheel chairs first time but I have since been back and it was very comforting to talk to a lady in her 70s who has had this for 40 years. You couldn’t tell she had anything wrong with her. Good luck and take your time to process all of this. Chis Ps I don’t like your picture I’m scared of clowns!!

7

Hi Boo and welcome to the site :slight_smile: Lots of good advice from the others so I really don’t have anything to add. Oh! One thing - you can reduce the odds of your children getting MS by giving them a vitamin D3 supplement. There’s lots of info on the vitamindcouncil and vitamind3uk websites (I’m not recommending buying anything from them btw, but the info’s good - supplements are cheaper elsewhere!). Karen x

8

thank you everyone, it’s still taking some getting used to but i refuse to let it beat me, it’s taken 9 months to get to this stage and i am not giving in now, compiling myself a little checklist of things i need to do, such as find out more about this, come to terms with it but still not like it, contact the dvla etc etc. thanks for all your advice and comments, they really do help. as i said i’ve kept myself in the dark over this, deliberately or otherwise, and now i’ve got no choice other than to face it, so any knowledge, tips etc are more than welcome.

and chris, sorry about the photo but it’s the only one i’ve got of me

boo x

9

Welcome from me too.

No words other than ditto all of the above and welcome to the start of your journey.

Never be scared to ask a question that you need to know the answer to.Many people learn all the time following questions other people have raised.

Sorry you have joined us but hello.

Pip

10

Hi, welcome from me too.

You`ve a lot going on with a toddler and a new babs on the way too.

You have had some good replies. Theres always someone here who knows exactly what you mean about a certain feeling, cos most of us have been there too.

Find some me time, if thats possible with little uns to look after. have you got some good friends or family who can take the little fella for a few hours, so you can get your feet up, before bab no 2 arrives? Hope so.

luv Pollx

11

thanks pip, another question has occured to me, it’s not aimed directly at you pip but you may know the answer anyway.

how do i know what kind of ms i have, my symptoms started back in january have never really improved, but have worsened over the last few months, do i have to wait and see if they go away again for awhile? am i given drugs and then see if they go away? my neuro (been here less than 24 hours and already picking up the lingo :wink: ) just told me i have ms but has referred me on to an ms specialist, do i wait until i’ve seen him? i know the chances of me having the remitting/relapsing type are pretty high but how do they tell for sure? wait and see?

Poll, thanks but i don’t have the toddler and the babs, their mum told me the whole “if you end up in a wheelchair…” thing, i’m not in a chair (at the moment anyway) but that kind of blows you away, but i’m working on it

12

Welcome from me too Boo

It must be a relief to get a diagnosis, yet scary too. Im undiagnosed but have been poorly for about 6 months now. I just want to know what is happening to my body. Not sure how I will feel IF I get diagnosed with MS, but it is looking likely.

Anyway, everyone seems to have given you amazing advice (as always on this site), and all I will add is that please do not ever feel silly to ask ANY questions as these people will always help and answer honestly and from their own experience. If you want to rant one day, come on here as it is fine to do that too. I know I do at times. And I also vent my frustrations about being ill here too… better on here where it is safe to do so.

I am sorry your relationship is not going well at the moment; some people just think they cannot handle this ‘illness’ and then come to terms with it when they are better informed. I could only suggest some sort of relationship counselling whereby your wife/girlfriend gets information about MS. Perhaps she will go to the appointment with the MS specialist who can explain things fully?

Anyway Boo, good luck and I hope your health recovers very soon. Have you applied for DLA yet? If not, I would suggest you do this as soon as possible.

Paula xx

13

Hi Boo, Me again, ask the neuro outright! An ms specialist will tell you, where are you going and do you know the consultants name? I was prescribed only vitamins after a course of IV steroids, everyone is different. Still don’t like your picture! Chis

14

Paula,

thanks for the advice about the dla, yet another thing to add to the checklist!!

in a way getting the diagnosis was a relief, in the at least i know what it is now and it has a name, but at the moment i seesaw between being relieved and thinking “knowing isn’t all it’s cracked up to be”, the when i didn’t “know” there was the chance that it was something else feeling, something i could just pills for a week and it’d go. i can’t tell you how you’ll feel if you do get the diagnosis but i can tell you how i felt, i remember it like it was yesterday, hang on it was yesterday! when the neurologist told me my immediate reaction in my head was, “see, i was right”, but outwardly i just sat there. it was strange, a mixture of “I could have told you that months ago”, relief that i finally knew officially what it was, fear, shock and stuff like that. i’m sure he told me stuff i didn’t hear or don’t remember and i came out with the “after interview feeling”, you know, i wish i’d said that i wish i’d asked this. if i could give anyone advice based on my experience yesterday, it would be, read karen’s posts about taking a list of questions and stuff with you, stuff you want to know, even basic stuff like “what happens now?”, if you want to know it then it’s important. you can always get the answers here, as im finding out, but why not get it from the doctor?

good luck with your diagnosis, maybe you will turn out to have a “take these pills and you’ll be as right as rain in a week”, lets hope so, if not, as i’m finding it’s not the end of the world although it feels like it right now.

boo x

15

Chris,

i am seeing the ms specialist who is a personal friend of the consultant i saw yesterday, all i know, well remember at least (see my reply to paula for an explanation of this :wink: ) is that his name is eli, that is his christian name, and i only know this as i sat next to the consultant while he dictated a referral to him for me, i presume it will be in the same hospital. thanks for the info.

and it’s still the only picture i have of me

boo x

16

I have to tell you all this, in the fear leading up to my diagnosis, I got it wrong about the “if you end up in a wheelchair” thing, I misunderstood what was being said because I wasn’t really listening just trying to deal with my own fear about what was coming. I wish I had listened properly, could have saved a lot of heartache and anger all round. And to you, you know who you are, I’m truly sorry. boo x