I have had MRI on brain and spinal cord which both shows lesions. I have received spinal cord results which show T2 lesions and multiple lesions on spinal cord. This all started with optical neuritis in left eye. All my symptoms and results look like MS but don’t see specialist till October. Please can someone help me im becoming mentally unstable with worry and can’t sleep.
Hi, sorry to hear of your ills and the worry you are suffering.
2 bouts of ON led to my RRMS diagnosis seven years ago.
It is an uncertain time but please remember that an MS diagnosis doesn’t mean the end of life as you know it, just perhaps some lifestyle modifications and a different outlook. Everyone’s journey is different and with today’s DMTs and science advances, you can go years without relapses.
All the best.
Retro
The wait is really frustrating.
But I can only agree with Retro above - if you get a diagnosis, it may not change your life as much as you expect. MS is a lottery - some people go for years, even decades, without symptoms. Nor does the number of lesions always mean symptoms - I have loads of lesions but almost zero symptoms.
And as years go by, even more treatments become available. When I was going through steps to diagnosis, I found it helpful to read up on research.
Has your optic neuritis resolved?
There are things you can be doing meantime to help you cope. Exercise, if you’re able, is good for MS and good for everything else too. Making sure you get plenty of vitamin D, whether through diet supplements (NHS website gives dose) and/or plenty of sunlight. Generally keeping busy with other things can help.
If you still have problems sleeping, GPs can sometimes help. I tried lifestyle changes but when that failed, they eventually put me on mirtazapine - that did the job, stopped me worrying all night, and with zero side effects.
You really don’t want MS anxiety to take over your life…
Dear @louie712002 . I hope the following is of some reassurance and help. A diagnosis of MS is really, really scary. I was diagnosed around 19 years ago and , facing the shock of the diagnosis, I saw myself in a wheelchair within a few years and then bed bound a few years later. Like you my diagnosis followed on from optic neuritis and then an MRI which showed ‘quite a few lesions’ ( I’ve never asked how many). In those days there were just 3 disease modifying treatments which, these days are considered to be the least effective ( I was put on weekly injections of Avonex).
19 years after diagnosis I’m still walking ( admittedly not very far but I was cutting our lawn yesterday morning until the heat became too much). Also experience bladder urgency but have wet myself just three times over a year or more. Heat is really really draining .
MS is a pain and everyone’s experience is different but I’m doing relatively well. In the 19 years since diagnosis I’ve got married, been on various holidays abroad- avoiding anywhere hot - and generally just getting on with life.
Living with the uncertainty of MS is a challenge and I do worry about my future so I try to take things one day/ week/ month at a time.
What helped me a lot was reading things like the Overcoming / living well with MS book and website - with recommendations on diet, exercise, meditation/ mindfulness to keep stress levels down/ keep mind and body calm. In general I also follow the general guide of ‘what’s good for the heart is good for the mind’ and similarly, do what’s good for the brain - food and exercise wise.
So yes there are things that you can do.
I remember getting really really frustrated at the wait to see a neurologist but try to look after yourself and not get too stressed ( MS isn’t like an infectious disease or any other condition where treatments have to be given urgently).
Please do feel free to ask me anything