Last reply 3 months ago
Newly diagnosed

Hi, I am new to this forum and have been diagnosed with RRMS. Started with optic neuritis in August & eye still not totally recovered, although is so much better than it was. Whilst I’ve now been diagnosed and have discussed and agreed on DM drugs, I am now waiting for an appointment with MS nurse to be able to start those drugs. I have been told that no appointments for some time could be after February or later next year. So feel a bit isolated and scared as because I don’t actually have even a date next year, it’s hard to get your mind round the fact that I have this condition, I don’t have any control about how it will progress and the bit of control I could have, by starting medication, I can’t get on with either. Then I give myself a talking to & remember I am lucky I am having the opportunity to see an MS nurse as an option. I am also in my early 50s, so as my initial neurologist said, I should be grateful I’m not in my 20 s and most people in their 50s take a tablet! But I think regardless of age, the uncertainty of the symptoms, timelines and progression is really scary and I’ve gone from being very strong mentally to a person who cries easily – is this normal? Sorry if this is too long a post, I suppose I Would just appreciate hearing from people who understand what this is like and to know I’m doing ok.

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mrbump
3 months ago

Hi Solo I’m in the same boat a few months down the road try not to worry
Not the worse condition to have
Once u see your nurse u will feel much better
Take care 🤗


solo
3 months ago

@mrbump
Hi mrbump
Thank you for response
I Think just having a vent was good
Agree there’s worse out there & not going to stress the stuff I can’t control..
Well that’s what I’ll keep telling myself.
Good luck with your progress too.


lea_jeffreys
3 months ago

I’ve had RRMS since 2009 and was put on a DMD. My first symptom was optic neuritis and up until this year I remained very stable. Because I’ve had 3 relapses in 2 years my medication is being changed. I can remember how I felt when I was first diagnosed, scared because I did not know what to expect and I went into denial. The way I have been dealing with my MS is by not giving in. I still work full time and push myself to work through any symptoms. I realise not everyone would be able to do this. I am also over 50 🙂 Try not to worry too much


cameron
3 months ago

It’s not acceptable to have to wait for any length of time. You could ask to be informed of any cancellations – I bet they do get them. Mind you, we’re mid-December now so Feb isn’t THAT far away. If it’s going to be any longer, you could contact the complaints dept (PALS) at your hospital and ask for their input. In the scheme of things, I don’t suppose this delay will affect the MS trajectory but it certainly contributes to your ability to cope and live normally. As has been said. once you’re in the system, things will fall into place. My advice would be: make a plan on at what point/ how to chase the hospital – then do not allow yourself to dwell on it until the time comes to act on it. Be firm with yourself and use the emotional energy you are expending on living as well/healthily as you can. I know that’s easier said than done, by the way, but it’s the only sensible way to get through this period of limbo. We’ve all been there. Sending big hugs, x

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