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Just found out and I’m terrified...

Hello guys this is my first post, My names Marlon and I’m a 35 year old father of one. I had an mri a few weeks ago because I had recently started needing glasses due to double vision and was invited back on Thursday morning and lo and behold I’m being referred to a neurological consultant. The consultant opthamologist informed me of demyelinating disease behind my eyes. Now I know I’m jumping the gun but a lot of things make sense now and though I have not been formally diagnosed he told me I had MS. So my guess is he’s seen this before. As you can imagine I’ve spent the weekend up and down, frustrated and a little bit scared! I think I’ve read everything possibly good and I’ve experience within the care sector of just how bad this disease can be.

Im short I’m looking for your support, encouragement and friendships. I know this is going to be an experience to say the very least.

Marlon x

Hello Marlon

It sounds like what you’ve been experiencing is Optic Neuritis - see https://www.mstrust.org.uk/a-z/optic-neuritis for more information about ON.

Optic neuritis usually completely resolves itself. But it is a very common first indication of MS. Although you may find you are diagnosed not with MS, but with CIS, this stands for Clinically Isolated Syndrome. It could be that your ON entirely resolves and that you have no further occurrences of anything related to MS.

So when you get the formal diagnosis from the neurologist, it sounds like it will be one or the other.

Whichever you are diagnosed with, you should be offered the help of an MS nurse and maybe a disease modifying drug (DMD). This might be offered to you in order to prevent relapses, or in the case of CIS, to prevent it becoming MS.

An MS nurse will hopefully be a real boon to your life. A good one is worth her weight in chocolate. They tend to help out with drug treatments, with symptom management, and with prognosis.

Best of luck.

Sue

Hi Sue,

forgot to mention the ataxia and the tingling pins and needles sensations. I hope to god you are correct but I’m going down the expect the worst hope for the best scenario.

I don’t want all this to be happening but have spent a lot of time reading people’s experiences on here and although I’m probably not ready per se. I have to get on with this which ever way it goes. I’ve read other people’s experiences and everyone seems to be there for each other and I’m gonna need all your help. So cheers for being the first to speak to me and offer me some kind of advice.

Marlon

hi marlon

what a blow!

you’re very welcome here although for your sake i hope it is a fleeting visit.

we are all here for each other and i look on many as old mates.

your head seems to be in the right place but you need to be strong.

my top tip is mindfulness mediation - ask for more info if you like.

how old is your child? girl or boy?

bet you have your hands full either way.

carole x

Hi Marlon,

You will get good advice here. I have not been diagnosed, just have lots of symptoms and am waiting for a neurologists appointment. I already have trigeminal neuralgia.

Whatever your results, I wish you well with it. You should get lots of support.

Take care, Ang x

Morning all, and sorry for such a late reply.

But hands have been full, Magdalena my 2 year old daughter really takes over my life!

I am doing my best to keep myself busy and my mind as clear as I can. But this is just lingering around.

I am hoping for things to just move forward so I can get a foothold with this disease, not for it to progress. I want to know what I’m facing! But i guess being in good place at present I should just take everything in my stride,this is going to be a long old road?

Having spoken with work they’ve been fantastic so far so I hope that keeps going that way though this rides gonna get bumpy isn’t it?

Anyway take it easy guys x