Newly Diagnosed

Everyday living
1

Hi all,

I found out two weeks ago that I have MS. I know that I’m lucky because I’ve been diagnosed six months after my first symptoms and some people wait years to get clarity on it. I just feel a bit depressed and frightened . The not knowing how things are going to pan out.

First of all I’ve had symptoms in some form consistently for six months when I thought with MS things were meant to come and go more .

But the thing that really upsets me is the changes to my vision. I had optic neuritis and my vision in that eye has not been the same since . I pass all the sight and fields tests now but when I go jogging or have a shower I can barely see out of that eye . From my research on the net this is an example of Uhtoffs Syndrome. I am waiting for my next ophthalmology appointment but was wondering if this gets better or if it will always be like this now? And what if I get it in my other eye as well?

Any thoughts gratefully received .

2

Hi mine started with ON. I have had ON on and off for 18 years and my eyesight is GOOD lol. go figure.

Optic neuritis (ON) is when your optic nerve becomes inflamed. ON can flare up suddenly from an infection or nerve disease. The inflammation usually causes temporary vision loss that typically happens in only one eye. … As you recover and the inflammation goes away, your vision will likely return

Now weirdly i had a VEP test which showed it bilaterally slowing response in both eyes, but only my left eye ever gave me trouble. thankfully it seems to heal itself so i don’t have much issue it takes about 6 to 12 months for all the other stuff like colour perception to settle down, and i darnt get too warm as yes it will give me a pseudo attack of ON. double vision all kinds of things. Oh and stress too is not good.

I never got sent to ophthalmologist.

I had two VEP tests one at beginning and one at end of my journey 16 years later and it was the last one that gave me the diagnosis of PPMS as it showed much slower brain responses.

Perhaps if i had been taken seriously back in 2000 i would not be in the place i am now. carp doctors sadly who just put it down to travel, and heat.

What form of MS were you diagnosed with hun? try not to be too worried hey i started in 2000 its 2019 and still the old granny is moving forward lol. even at 68. xxx

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Oh and i dont think your LUCKY cos you got diagnosed in like quickly. xxxx six months to 16 years the end result is still the same MS.

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Thanks for your reply . I had to look up what a VEP is . So much new vocabulary . I’m not sure what type I have yet . Waiting for another scan and meeting with a specialist . Trying to be calm and patient ! Hope you’re ok and again , thanks.

5

Hi Zed,

A diagnosis of MS is like having a silent , dirty bomb dropped on you, Everything is suddenly thrown into what seems to be catastrophic uncertainty, with regard to both the present and the future. The only good thing is that you have been diagnosed early, and have a plethora of disease modifying drugs at your fingertips, assuming your version of this wretched disease is relapsing remitting in form . Make good use of the talents of your neurologist, and speak to an MS nurse, if one is available to you, as soon as possible. You might benefit from a short course of steroids to clear up your vision, and it is always worth trying to explore ways of slowing the disease down, as per the drugs I mentioned earlier.

Unlike both yourself and Chick, My version of this wretched disease didn’t start with optic neuritis, but I have suffered it as part of a relapse and know that it can be pretty distressing. Fortunately, mine cleared up, and hasn’t come back.

Uthoff’s is also horrid - it makes me think as if I have no energy, and am wading through mud, which is exhausting. If you are out running or exercising, go out and buy yourself a cooling vest - they can be found on Amazon, and they can be of great help. Similarly, try not to take showers that are too hot, because it brings on that effect.

Ultimately, though, try to remember that you aren’t alone. There are a hundred thousand of us in the UK in your shoes, and there’s a big chunk of 'em hanging about on this forum, always willing to lend an ear, share experiences, tips, and advice so drop by anytime!

AV/Nia ( 25 year MS veteran, winner and still standing!!)

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some good advice - find out as much as you can about m.s. - the different types and the different drugs available - don’t assume that the medics always know what is best for you - you may have to fight for what you want. Don’t let the m.s. dominate all your waking hours.

1 Like
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Thanks for your welcome advice. It’s all a lot to take in and, previously in my life, I would have gone running to try to get to grips with it mentally. Now when I run my vision is so impaired by Uhthoffs I want to cry.

It’s reassuring to know there’s a community out there navigating their way through it too.

Z

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Perhaps it’s heat while jogging or showering that sets off your ON.

Best wishes Jan x

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Like Jan said if you have ON, jogging and getting warm will make it worse i.e. more blurry eye but it soon recovers. try and keep your core temp down when jogging make sure you hydrate with cool water. When i have a bout of ON heat really makes it worse and stress, it can take a year for all the affects to go away.

the affects are temporary but heat is no good for MS in some people not all. I hate the heat ugh.

Just keep on trucking hun Zed its all good for your body. xx I have blepharitis now which is equally or more so annoying then ON as it has turned into dry eye syndrome and i have now got to put up with in growing eye lashes so they have to plucked about every six weeks lol. ah the joys.