Possible diagnosis via letter

Hi all,

A bit about myself. I’m a 36 year old male and about 4.5 years ago in early 2020, I noticed some fuzzy vision in right eye that was diagnosed as Optic neuritis. About 4 years later in January this year, I started noticing fuzzy vision in left eye when running (no other symptoms). I’ve been for an MRI and was sent a letter that this was likely MS and an appointment was being planned with Neurologist.
I suppose my first question is, is it normal for people to be told diagnosis before seeing consultant? Me and my wife have had several issues over years including my mum dying from cancer and my wife nearly dying during birth of our child so getting this news was both heartbreaking but also made us angry given the blasé approach in the letter.
My second question (which is up for discussion) is what is life like with S these days? It’s likely I have the relapsing form of MS but I keep getting mixed info on that current treatments are better now than 20 years ago (as is quality of life), but then also info on internet that life will only get worse, I’ll end up in wheelchair, have to stop working and driving, as well as hobbies I love doing such as hiking (I’m trying to bag all the Munros in Scotland).

First thing to do is make sure you have “critical illness cover” in the event of an MS diagnosis.
My GP told me over the phone that I probably had MS, but only a Neurologist can actually give a diagnosis once ruling out the alternatives.
Yes, treatments are a lot better now, and getting a highly effective DMT like one of the '*mab’s gives a massive boost towards an improved long term prognosis.
Early treatment can almost halt the MS in it’s tracks before any serious damage occurs, so you’ll probably be claiming your pension before needing a wheelchair.
It’s true that there is no cure or means of remyelination yet, but the early treatments of steroids and beta interferon have been greatly improved upon now, so although things will only get worse, effective DMT’s can leave you able to have a full and productive life with few complications. It’s a pain in the arse sometimes, but not an imminent disability & death sentence, unlike MND.
So don’t get too worried by everything you read on the internet.
A couple of trusted sources are Prof G.'s site, Google “Professor Giovanni MS” and the Barts-MS blog at https://multiple-sclerosis-research.org/ .

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Only consultant neurologist can formally diagnose MS, but that doesn’t mean that other clinicians (or indeed patients) don’t sometimes have a pretty good idea what the matter is long before it becomes official.

As for life expectancy if you absentmindedly step off the pavement with your nose deep in the life expectancy tables and fall under the number 17 bus, you won’t need to worry about that. In fact you really don’t need to worry about that anyway. I certainly don’t.

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Hi 6578. One thing you have probably read is that the course of MS and its symptoms varies enormously from person to person. However, here is my story. Diagnosis some 18 or so years ago when a I was a fit ( hill walking ) man in my early his early 50s. For some 5 years or more ( cant remember exactly how long) it didn’t affect me and other than injections every week, I forgot I had MS. Then suddenly developed slight problems with my right leg after walks of 30-40 minutes. Now, 18 years later and a little over 70 years old I have trouble walking for more than 10-15 minutes and use a mobility scooter for anything longer. The problem does seem to be with my right leg plus the general fatigue that develops after using it for more than 10-15 minutes. A few other minor problems as well - when I feel a need to pee I do need to get to the bathroom quick!

So far as I know the recent treatments are significantly better / mor effective than the older ones including Avonex which I am on. A total guess from me is that you probably will find that over the years life gets worse in terms of abilities/ disabilities but treatments should slow down the process.

For me, MS is a ‘downer’ and it has changed my life ( for the worse) but I still enjoy life ( even though I can only look from a distance at Munros I used to climb. Didn’t do many but my last ones were around Bridge of Orchy in the winter😀. Now restricted to short walks around local RSPB reserves and the like).

No idea if I am going to end up as a wheelchair user. Always look on the bright side of life etc and at 70 I don’t suppose I can grumble too much.

If you have any particular Munros you want to do then I would do them now and for as long as you can keep going. Oh and don’t get too angry! Stress and anger not good for MS - something to do with inflaming the immune system and possibly exacerbating damage to the brain- nerve system. So - a Zen like approach to always look on the bright side of life, and plan for the worst but hope for the best.

Apologies if I sound flippant. I do remember the horror and gloom of diagnosis and I do get down at times but overall and so far life hasn’t been too bad at all.

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Thanks both. Certainly latter point on being knocked over by the bus was mentioned to me a by a few people I’ve spoken to. And also the point I mentioned that my wife almost died during labour puts things into perspective.
Spoke to neurology and I was on 10 month waiting list (take that what you will…) but managed to get it brought forward to next month. Overall besides my eye issues I’ve been physically good the last 5 years but think just the general frustration with having that info dumped on me and the wait and see attitude hasn’t helped.

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