Forum

Struggling - support/advice

Hi all,

I’ve not been having such a great time of it of late, starting with lightheadedness and my right leg going numb on and off about 7-8 weeks ago (lasting about 2 weeks, short episodes on and off). The about 3-4 weeks ago I started with double vision. About 1-2 weeks ago, on top of the double vision, I’ve now started to get headaches and really quite nasty nausea. This is as well as episodes of fatigue. I finally saw the neuro again last week, who basically didn’t do anything except say yep it’s definately MS - inflammation of the brain stem (was only diagnosised about 3-4 weeks before - only symptom until then was optic neuritis, and I had reported some vertigo but my neuro had been dismissive of it until this visit). Hmmm… thanks for that genius. After I pushed him he gave me a script that I could take to my docs for anti-nausea meds, and one for a weeks time if the double vision hadn’t cleared up for a short course of steroids. He has finally referred me to the MS team (I asked when I was previously there in June, but he said there’d be no need - lol!), so hopefully I’ll get an appointment with a neurologist who actually knows what they’re talking about soon and with the MS nurse, and I’ll be able to sort out going on to meds to slow down relapses.

I’m also a nursing student, and am just finishing my placement. But it’s been so so hard to even so much as get up and go in some days, let alone keep going - I’ve just felt so ill I thought I was going to collapse. And my neuro seemed to be pretty dismissive of this as well. Nor are the uni supportive. It’s difficult, because I don’t really know what would be reasonable adjustments to ask of them + I don’t want to make a big fuss because of employability after uni (whch they’ve already mentioned), and incase they say I’m not fit for the course anymore (which they’re beginning to try and hint at). My tutor said to me why don’t I take a year out and get my health sorted then come back after that (like MS is something that goes away).

I’m just feeling pretty fobbed off and very isolated / out on a limb at the moment. I feel like I don’t really know what kind of prognosis I’ve got, nor anything about the type of MS I have, nor how long it’ll be until my eyes go right (given it’s been 4 weeks already) if at all and what it’ll mean long term if they don’t, nor what support is out there for me if I can’t complete my nursing course / practice as a nurse (as my family isn’t very supportive - they have a lot of mental health problems and can’t really cope with it so I don’t know where to go with it really).

Anybody know of any support groups or anything in the Southampton area, or can offer any advice for me please?

Many thanks,

Forest

hi forest

i worked out that you’ve been diagnosed for about 5 weeks. (if i’m wrong, please excuse)

have you got a good gp?

if so, have a good talk to him/her and see what he/she recommends.

please dont make any decisions about uni.

maybe take some sick leave.

ms isnt the end of the world but its a big change and you need to get to know what your body can and cant do.

when you have seen the ms specialist and started dmds, then you can deal with uni

dont forget that the disability discrimination act means that they have some responsibility to support you.

the ms society has groups in most towns and there are also the ms therapy centres.

they are great places to meet other people with ms.

i’m in greater manchester so i dont know whats on offer in southampton

take care

carole x

What a lot to get your head round all at once.

Vertigo, nausea and double vision make it hard to carry on as though it’s business as usual and you must be very disorientated feeling that your uni course is in jeopardy.

Although the advice to take some time out did not seem very helpful, actually it is. You said yourself that you don’t know what help to ask for because you don’t really know what you need. Once you have had chance to see the MS team you might have a better idea of your capabilities. Nobody can give you a long term prognosis of course but in a couple of months you will be better able to get your head round what’s going on. I don’t suggest just taking a few weeks off sick – because this will put you behind your cohort and be ultimately quite stressful. Could you step out of your current course and rejoin it with another group in a few months? Your tutor seems to be in favour of this. I know it will make your training longer but might be the road to success. Obviously your MS is not going to go away but by then you will be better able to deal with it and understand the limitations it will place upon you.

It can seem very lonely when you are first dx. Even if those around you are supportive they can’t really understand. Carole suggested the MS Society and I concur. In my town there are chat groups where you can socialize with other folk who “get” it.

Good Luck

Jane

Thanks for your comments. I wish I could take some time off, but if I take a year off, then all that’ll mean will be getting a full time job to support myself, which weren’t easy to come by before the MS dx let alone now, moving back with my dad and becoming almost completely dependent on him again (and we don’t have a good relationship, he’s a very angry person which is mainly because of his depression, but still it’s not nice) , giving up my counselling as I would no longer be able to get there (specialist counselling I’m having for something that occured a few years ago, but because of that and other stressful things including family problems, my counsellor thinks I have PTSD, so I don’t think would recommend going back home), and generally taking on all the stresses which I’ve just managed to get away from. I don’t think it would be very helpful really, even if I don’t think continuing with the course at present is the smartest thing to do. The uni knows about what’s going on at home / my personal problems as well, which is why I can’t really understand the suggestion to take a year out as she knows it’s not practical. All I can think is that it’s her way to make me leave, as the additional stress it would cause me would probably cause me not to go back. It’s why I’m looking for a support group or something in my area as there just isn’t anyone else.

Thanks Forest

Thanks for your comments. I wish I could take some time off, but if I take a year off, then all that’ll mean will be getting a full time job to support myself, which weren’t easy to come by before the MS dx let alone now, moving back with my dad and becoming almost completely dependent on him again (and we don’t have a good relationship, he’s a very angry person which is mainly because of his depression, but still it’s not nice) , giving up my counselling as I would no longer be able to get there (specialist counselling I’m having for something that occured a few years ago, but because of that and other stressful things including family problems, my counsellor thinks I have PTSD, so I don’t think would recommend going back home), and generally taking on all the stresses which I’ve just managed to get away from. I don’t think it would be very helpful really, even if I don’t think continuing with the course at present is the smartest thing to do. The uni knows about what’s going on at home / my personal problems as well, which is why I can’t really understand the suggestion to take a year out as she knows it’s not practical. All I can think is that it’s her way to make me leave, as the additional stress it would cause me would probably cause me not to go back. It’s why I’m looking for a support group or something in my area as there just isn’t anyone else.

Thanks Forest

Hi Forest,

I’m sorry that you have such a lot on your plate at the moment.

I can see why a year off would not work for you. I think that everyone feels turned upside down by dx never mind all the extra pressures that you have. All I can say is that it does get easier to cope as time passes. I’m SP so I don’t suffer with the highs and lows of relapses but there is every likelihood that what you are experiencing now will pass and you will begin to feel better. Try to make sure that you get enough rest.

Try the MS helpline if you need to talk to someone.

Jane