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New diagnosis.....sort of.

Hi all,

Long time reader, first time poster.

Brief description ion of my new diagnosis…

i was was diagnosed in 2010 with RRMS. At that time I was working on the railway in my dream job so I didn’t want to rock the boat, as they would take me away from that job ASAP due to safety for myself and others. Anyway, because I didn’t want to bring any attention to myself I didn’t speak to anymore doctors or healthcare professionals. Now, I’ve left that job, and now working in an office. It’s a bit of a weight off of my shoulders as everyone knows about the MS and is quite open about it.

now my question…who should I speak to to try and get back into the system to try and get some relief from these nasty symptoms etc?

i know I haven’t made myself terribly clear, so if you’ve got any questions for me, just ask. Any help would be GREATLY appreciated.

Thank you,

Simon, 29.

Hello Simon and welcome,

Go to your GP and asked to be referred to a neurologist, it may take a while before you get an appointment. Have you got a MS nurse? Your GP is able to give you something to help you with some of your symptoms, so ask him he should be able to help you until you see the Neuro.

Janet

x

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I agree with Janet. GP and then take it from there.

Sometimes it takes a little while for a person to be ‘out’ about having MS, for all sorts of reasons. It sounds as though circumstances mean you now feel able to look about you and see what is out there to help you. I cam imagine that that feels like a bit of a mixed blessing. I hope that you find that there are things (like drugs and professional advice) available that will make life a little easier.

Welcome to the ‘above the line’ MS club. :slight_smile:

Alison

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Hi Simon,

I too kept quiet about my MS for a very long time, but eventually it caught up with me and I learned, as you’re finding, that it’s better out than in.

I can’t add anything to the advice you’ve been given above, seeing a GP should get you into the system.

You don’t say what your ‘nasty symptoms’ are, but there’s a whole bunch of treatments available, so hopefully you’ll get some relief soon.

Ben (not 29).

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Thank guys for your responses. I have a dr appointment this morning where I’ll ask to be referred to the neurologist and discuss my symptoms.

Funny (not really, quite tragic to be honest) story as to how I was told my diagnosis. I went to see the neurologist where he eventually referred me to get a MRI. Had that, and then a few weeks later I received a letter (yes a letter!), to say that I had a lifelong, life changing illness. It’s only because my mum has progressive MS that I knew so much about it and wasn’t completely in the dark about it.

Anyway, fingers crossed, see what this dr says.

Simon, 29 and a half.

Hi Simon

Hope you get on OK at docs and the referral doesn’t take too long to come through.

My mum also had MS and I have been a bit like yourself not wanting to keep going to doctors as didn’t want to know what was going on. I have had symptoms over the years and have mentioned a couple of times and asked could it be MS to be told highly unlikely that you would have it its not hereditary etc. it was only when my left side went numb and I also failed field vision test at opticians a few times that I decided to go to docs after patches of numbness on my foot and tummy. They mentioned MS then and although I have suspected it, to actually hear a doctor say it could be MS was a bit of a shock. So I have had MRI and VEP test and also currently waiting for my letter. Neurologist when he assessed me said he thinks I am fine but will order tests to be on the safe side. I think they all think I am imagining these symptoms because my Mum had it. I am 32 and lost my mum to this horrible illness when I was 19 when she was just 42. Scary to think she was only 10 years older than me. I really don’t want to have it. I am not insured for MS either as everyone wouldn’t insure me for it

surprised the letter you got just told you I was expecting the letter to say abnormal and then have to go in to find out what’s wrong. Guess I will be finding out either way soon. The only reason I went is because my friend said that more drugs now that can give you fewer attaches/slow it down I have a 6 year old and 3 year old and don’t want history to repeat itself.

Let me know how you get on x

Back from the dr and she has referred me to the MS staff etc. I’m sure from there I can get to see the neurologist etc, but at least I’m back in the system because when the dr went through my notes and letters it would appear that I’d slipped through the net. S, onwards to the next step and let’s hope I can get some help with this b****** fatigue and balance.

Back from the dr and she has referred me to the MS staff at the local hospital. I’m sure they’ll give me all the info I need and the help to help combat this annoying fatigue and balance issues. When she went through the letters from my original diagnosis, it would appear that I slipped through the net completely as I haven’t heard from anyone since 2010. So, onwards to the next step, at least I’m back in the system.

Hey Simon,

Good luck,

Although having several family members within the Railway (drivers + drive trainers) I am glad you are not in that job. Without sounding rude but if you had RRMS and your job posed a risk to the safety of others… Kind of selfish.

Anyway its not a dig or an attack on you, personally I find it hard to tell myself I cant do what I once did. We are the same age so I really do get it.

Everyones advice works, GP will refer you, I am currently waiting on a 2nd opinion referral. Stay positive.

T

Cheers Tommy,

yeah, I’m pleased I’m not on the railway anymore (and that is selfish). Fortunately, my role didn’t have to be quick acting, as they shoehorned in extra time for me to make sure the train was safe before I would let it run (I worked with freight not passengers).

Yeah i I work in a pretty sedentary office job, which is ok, not my ideal as I loved my job on the railway even though I moaned about it every second of every day (railway mans prerogative to moan about everything((it’s why they are always striking)).

But yeah, all referred to the MS team at the hospital, so now just have to sit and wait.

Well good luck and stay chipper and should you want to chat, send me a message.

Br

Tom

hi simon

did i read that you are 29 yrs old?

if so, you should be offered one of the DMDs.

the neuros are wanting to set people off on these as soon as possible these days.

if you haven’t already done so, spend a bit of time researching these drugs so that you won’t be bamboozled when you see your neuro.

good luck

carole x