Last reply 8 months ago
Help!!

I’m not sure if I have Ms.
But I have got optic neutritis I saw a doc today n he said b(bluntly it relates to ms you may scare yourself if you Google it) he also mentioned that I had a cold n it could be the cause but I did have the same thing 4 years ago.
I’m new to all this I’m petrified i don’t know what to expect I have 3 beautiful children and this thought is just killing me I feel heartbroken and so alone…. i know i don’t know for sure but I’m scared xx

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stumbler
8 months ago

Hi @vincentnancy88 and welcome.

I can really understand you feeling petrified. You’ve just had a Doctor give you a very unprofessional feeling that he may know what’s causing it, and if you check it on Google, it’s going to scare you. Well, that last bit was right!

You’d probably heard the term MS, but only ever had mental images to go with the term. Yes, there is a feeling of being alone, as the only people that talk about MS are those people with MS. The rest of the population is blissfully unaware of what it does and doesn’t mean.

We don’t recommend Dr. Google either. You can find a lot of misinformation and, given your circumstances, you just need the true facts so you can understand a bit about the condition. At least you found us…………

Anyway, MS is now a manageable condition. It’s not life-threatening and doesn’t mean an express one-way ticket to a wheelchair. So, sit down, take some deep breaths and calm yourself down.

Now, I assume that you’ve already had an MRI scan? And, was it just your GP that broke this possibility to you? It’s only a Neurologist that can make this diagnosis, so I hope you have been given a referral.

So, whilst you’re waiting for the NHS wheels to slowly rotate, eat a healthy balanced diet and live a balanced lifestyle. And, please avoid stressing yourself. This can and does make these matters worse.

So, any questions that we can answer for you?


vincentnancy88
8 months ago

Hi @stumbler Thank you for your reply!
No I haven’t had an mri I’ve had this awful vision for a week was told it would all be fine… well today I cracked made the doctor give me an opthermology appointment.. to be told it sounds like it’s optic neuritis… but it’s such a major factor of ms and of course I’ve Googled everything and now sat here in tears crapping my pants!! Im just scared of the outcome but i just want to know i was told to wait six weeks for my next appointment to see if my eye has improved.. but if I get numbness ect to go straight back but I don’t want to wait that long I’ve got children to raise I don’t want this on my brain what do I do ๐Ÿ˜ฃ im sorry to act so ridculously but i dunno what to do with myself ๐Ÿ˜ฃ


stumbler
8 months ago

Good grief, @vincentnancy88 , it seems that all the medical people you’ve seen so far have given you their best guesses. That’s tantamount to mental cruelty!

I’d contact your Doctor on Monday and demand an immediate Neurology appointment to provide a definite diagnosis. Explain that what they have already told you has left you in pieces!


vixen
8 months ago

Oh, what a nightmare for you. Iโ€™m sorry youโ€™re suffering. I see from your profile you are in London so some of the best neurology departments are on your doorstep. Stumblerโ€™s right, only a neurologist can diagnosis and this is usually after several stages like lots of blood test, MRI and often a lumbar puncture. It may, or may not be MS, who knows. But you will find the strength to deal with it. Most of us on a site like Shift avoid Google. I got diagnosed pretty much out of the blue a year ago. My world has not ended, itโ€™s just adjusted. So, if it is MS, you are entering the world of MS at a good time in terms of major, major breakthroughs in the world of medicine and research. Whatever is going on inside your body, itโ€™s going on regardless of whether you invest stress and anxiety in the situation. Focus some time in energy in trying to write a time line of possible flare ups or symptoms in the past which you could talk to the neuro about. Take care, and please report back on how you are doing x


edmontonalberta
8 months ago

@vincentnancy88

Without a spinal tap & a brain MRI (both were completely minor for me), they are just guessing. If perchance you have MS, there are 4 different types; three have drugs that help.

I have the 4th (PPMS) and I still do everything I used to do except run or walk long distances. Actually I walk like a drunk – but I am the exact same person I was before diagnosis. Still got my wife, my friends & my family – these are the important things in life…

So to reiterate others advice, don’t panic or get paranoid. Find out the facts!


chezy17
8 months ago

Hey.

I’m gonna third that and say don’t Google, Google is rubbish at the best of times for self diagnosing as you’ll end up diagnosing yourself with the plague or something ๐Ÿ™ˆ.

I only got diagnosed in 2016 and I found out by chance what they were looking for the Christmas before that, as the Neuro letter that was sent to the doctors came to me too ๐Ÿ™ˆ. So I googled and it was the worst thing I could’ve done.

I’d also be careful on some MS websites, as some people can be very negative which I understand it’s not easy but being positive about stuff really helps which is why I come on here as people are really friendly and helpful ๐Ÿ˜Š.

As for your children, I have two children and it doesn’t stop me from doing anything with them, bike rides, walks, theme parks you name it! All it does is make you re-evaluate stuff, appreciate the small things more. Duvet and film days are perfect for the days when you need to rest up and re-charge your batteries.

I still do everything I used to, probably more these days ๐Ÿ˜Š.
So take care and look after yourself ๐Ÿ˜Š.


tog2-0
8 months ago

Pardon my french but that doctor is a f***** d***, these “white coats” throw a half diagnosis at us then kick us out the room to go & deal with it, & that sucks, they took over two years to confirm mine (lumbar puncture) & all that time I’m pretty sure the stress gave me more symptoms than the disease.
so collect facts & not Googles (which actually did once tell me I had the plague) hang in their “do not distress yourself with imaginings, many fears are born of fatigue & loneliness” – Guess where I nicked that from? ๐Ÿ˜€
& apart from avoiding the odd ex-in-laws very boring dinner parties by being “too MS tired” ๐Ÿ˜‰
MS hasn’t stopped me doing anything I ever really wanted to do.
I just do the important stuff – differently.

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