Forum

Advice re pos relapse plz

Hi there,

I only had my first symptom of MS back in Jan this year (ON), and after tests was formally diagnosised in June time. Since then, 2 things have happened. Just after my appointment with my neurologist, I started to get episodes of light headedness combined with my right leg suddenly felling like a dead weight. They were generally fleeting in nature, and it was generally only my right leg, except on the one or two occasions when it was at its worst when both my legs virtually went from under me completely. However, this has cleared up now (thankfully).

However, now, my eyes are playing me up again. It started about a week ago. It’s the right hand side (same as last time), but the first time round I had blurred vision just in the right eye with a slight loss of periferal vision and a small drop in colour vision. This time round, it seems to be more double vision, and it seems to be binocular i.e. if I close either eye, the other one seems to be able to focus just fine, but both together produce this problem off to my right hand side. There’s no pain with it (though I didn’t particularly have pain the first time round). If it is the MS, my prob is that I’m a student nurse, and this is obsuring my vision enough + generally putting me off what I’m doing to consern me. I don’t have an MS nurse (the neuro wanted to wait to see how the next 6 months went - lol!), and my GP is useless (went about the leg + light-headedness + got the ‘what do you want me to do about it’ type of treatment). So any advice as to want I could/should do would be gratfully recieved.

Many thanks,

Forest

Hi Forest

Sorry about the symptoms and the GP reaction - I read somewhere that some GPs probably never see a case of MS in their whole career, and many know little about it - I had to educate mine! I remember one time I went with MS symptoms before I was diagnosed and she rolled her eyes at me and said that I probably had health anxiety disorder.

​I’ve had light headedness - like your about to pass out? It’s happened when I’ve been out and about which is quite scary.

Can you go back to your neuro? I don’t understand why you are not able to access advice from an MS nurse if you have been formally diagnosed - this seems really strange

Have you been offered treatment for your MS?

Fizz

Hi Forest

Sorry about the symptoms and the GP reaction - I read somewhere that some GPs probably never see a case of MS in their whole career, and many know little about it - I had to educate mine! I remember one time I went with MS symptoms before I was diagnosed and she rolled her eyes at me and said that I probably had health anxiety disorder.

​I’ve had light headedness - like your about to pass out? It’s happened when I’ve been out and about which is quite scary.

Can you go back to your neuro? I don’t understand why you are not able to access advice from an MS nurse if you have been formally diagnosed - this seems really strange

Have you been offered treatment for your MS?

Fizz

Nope - he said he wanted to wait to see how the next 6 months went before looking into treatment. He said that if I was really keen (which I wasn’t at the time as had only the one relapse) then he could refer me to an MS nurse to find out more about treatment, but he saw no point. I think he was hopeing that I wasn’t going to get any more relapses, although I think he was also suprised by the results of the MRI (I don’t think he was expecting to see any new lesions on there of which there were, thus the ‘lets see how the next 6 months go’). I don’t think he really knew what to do.

Forest

Also, my placement that I’m o at the moment don’t currently know that I have MS. Should I tell them? Occy health are aware + have cleared me (though that was pre the new symptoms), and the uni is too, but the placement isn’t.

Thanks Forest

Hi Forest

I think telling people that you have MS is a personal choice - you are protected by the Disbility Discrimation Act as you may know, and you are under no obligation to disclose that you have MS to your co-workers, unless you need to for your own safety and well-being or if you want to tell them. If the Occupational Health department have cleared you then I think it is really up to you whether you want to tell others or not.

When I first got diagnosed, I tried various things, including a casually dropping it into the conversation approach once with someone I didn’t know which was a disaster - I don’t think they understood that MS is on a spectrum and everyone’s MS is different - sadly for her the only experience she had of someone with MS was a very serious case, so I think she thought that I was going to get very seriously ill quite soon, maybe even die, and made all sorts of remarks that were meant well, but made me feel absolutely terrible and quite traumatised - sometimes choosing not to tell people is about self-preservation. It’s an unfortunate fact that MS is widely misunderstood.

So, from experience, because generally I’m well, I tend to tell on a ‘need to know’ basis only, and then there may be close friends and family who you want to tell - but this is your health and it’s an incredibly personal thing. If you want to tell people that’s absolutely fine too - but from my experience, and as you are newly diagnosed, I would advise that you take your time and think about what’s in YOUR best interests.

Take care,

Fizz

You might think about getting your GP to refer you back to the neuro and then asking the neuro to put you on Tysabri. This is the most effective disease modifying drug and (from my experience) you want to get it early if you can, because it slows down the rate at which you accumulate disability - if you start it once you have lost function, that function (probably) won’t come back. I have an IV infusion of Tysabri every four weeks and there is a woman in my Tysabri group who seems in a somewhat similar position to you - a community nurse, 23 years old, not showing any signs of disability (although I know she has bladder control issues) who has been on Tysabri for a while. I wish I had been able to go on it soon after diagnosis.

Thank you both,

I felt I had to tell my mentor and buddy in the end today since the vision was concerning me suffiently that I am worried about my ability to do my job properly. I think the sudden onset may be in part due to this horrid weather (bar humbug - bring back winter), so agreed with them to do nights instead of days for what remains of my placement. I phoned the neuro department too, so they should hopefully phone me back either Fri or Tue, so hopefully they should be able to help too.

Many thanks,

Forest