4 years ago
just been diagnosed with Ms

IM 23 and was diagnosed.with Ms just 7 days ago. I have double vision and fatigue. Can t see anything unless I have a patch on one eye. Can’t work can’t go out with my boyfriend! They say it will go away but when and for how long?? Help xx

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Welcome to our piece of cyber-space. You’ll find a wealth of like-minded people here, who actually understand your concerns.
There’s an interesting post active at the moment about visual disturbances, which may be relevant to you.
But, generally, you’re young and you’ve just had a bit of a shock, a life-changing event. So, go easy on yourself, rest up and try and take it all in.
Worrying/stress only makes symptom worse.
So, have a look around, jump in on any active posts and start some of your own for your concerns.
We’re all friends here.
🙂

Thankyou. When will these symptoms go ? Have you had them

I expect the past seven days have been the longest ever! Welcome to shift! No-one here can say definitively when a symptom will go. We just know that – annoyingly – it rarely happens overnight. Your best bet is to make/keep contact with an MS nurse, who can discuss what’s going on and hopefully reassure you. As a newly dxd MSer, you need loads of support – well, we all do actually, but never more than in the first stages after dx. You should have a contact number for a specialist nurse – if you don’t, get your GP to sort this out. In the meantime, it’s a good idea to keep a brief diary of symptoms, so that when you talk to someone medical, you can be really precise. Are you on steroids? Keep us in the loop and please don’t despair. It DOES improve.

I assume you mean optic Neuritis, which is a common symptom of MS.
I’m no expert on ON as that hasn’t bothered me. But, generally, most symptoms can be stabilised/addressed by resting up and not worrying.
Did your Neuro mention any potential treatments when you got your diagnosis, or are you to see them again shortly?

Thankyou both. I think I’m still in shock and I know I’m making it worse by worrying but not taking it very well.I lived a very crazy life before going out drinking not taking things seriously and now can’t do anything but I’m trying to stay strong for my boyfriend is supportive and my friends and . Just want to get back to normal the nurse said I need to rest.I’m seeing on Monday so hopefully will have some idea when it will go Coz its getting worse.I’m not on any medication x

I think we’ve all live crazy lives, so don’t single yourself out! 🙂
OK, a diagnosis of MS is a shock, but it’s not the end of the world. It’s a manageable condition. You now need to learn a bit about it, so that you are best placed to manage it.
Have a look through some of the MS Trust publications here :- http://www.mstrust.org.uk/shop/products.jsp?catid=36
This should explain the situation and answer a few questions.
Your MS Nurse will become your best friend as they’ll be available to answer all your questions and concerns. They are usually specialist MS Nurses, so should be quite useful as you gain knowledge.
So, consider the questions that you’d like answered. get them written down so you don’t forget.
Will you be alone when you see the Nurse? At this early stage, it is wise to be accompanied, as two sets of ears are better than one.
So, until Monday, put your feet up, chill out and read.

Thankyou. I’m seeing neurologist too. Hoping to get some glasses so I don’t look stupid with a patch all the time! Yes either my mum or boyfriend coming with me I will read them n thanks

If your eyes are your major problem, the Neuro might suggest a three day course of high dosage steroids. These are used if you are suffering a severe relapse, to kick start the body’s own recovery.
They may be mentioned when you ask the question, “what are you going to do about this, what is my treatment?”

Yeah. Apparently they said they didn’t want to give me any medication as the side effects were to much of a risk . That’s what they said when I left hospital because I was in shock they were not giving me anything just attending me home!

I assume that they did some tests on you prior to making the diagnosis, e.g. MRI scan?
The Neurologist will have more expertise on these issues and will look at the severity of your symptoms, whilst they consider any potential treatment.

Yeah I had MRI scan then they told me could be Ms! Was supposed to have the lumbar puncture so its conclusive but the neurologist said its definatley Ms no need for lumbar puncture.I’m guessing my brain didn’t look to healthy for him to diagnose me so quick!

The MRIs can be conclusive and it’s becoming less frequent for lumbar punctures to be done. Your brain is probably fine! 😆
Sometimes, the presenting symptoms. together with the MRI allows the diagnosis.
Just take the next few days off. See if you can get away with doing nothing, so you can list your questions. Also, consider any strange unexplained events prior to this episode, which may form part of the bigger picture, e.g tingling sensations, etc.
But, one of your major questions will be, “where do we go now, with regard to treatment?”

It is my m neurologist is going to discuss treatment. Hope it goes soon and I get atleast a year off! That possible?

It will be your Neuro, who discusses treatment.
And, it’s more than possible to have a long period of remission, even forever. Anything is possible with MS, but it will be down to you to manage the condition.
Worry/stress are bad news and irritate MS, so try and avoid worrisome/stressful situations.
Also, “listen to your body”! Your body will give you messages, like saying, “I’m tired” – Don’t ignore these messages.
Otherwise, just take care of yourself and eat a healthy balanced diet.
MS isn’t all about wheelchairs. Only a small percentage of MS sufferers end up in wheelchairs.
And, keep talking to your boyfriend. This will affect him, but he won’t feel what you feel, especially when you still look in great shape.

hey @scarletmartina7 im sorry to hear about what you are going through. its tough, i know. I also had double vision and some other things when i was in the hospital the first time, which lead to my diagnosis at the age of 24. The only thing that helped my double vision was the steroids. interesting to hear they didnt want to give them to you at all, i know taking it long term is really not good for the body but with MS i know that occasionally we cant avoid them, you may want to ask your neuro more about it.

best of luck to you, and feel free to message me if you ever want to chat! i was just diagnosed in September so im pretty new to this all as well (though not as new as you!) this is really a great site to reach out to other people who have a vast knowledge about MS so dont be afraid to ask any questions that you may have!

Sending loads of love your way, Tina.

Optical Neuritus (ON) is so scary, and effects everything you do. I had to wear a patch too. It lasted a few weeks, then I gradually got better, but everyone is different. Mine still affects me if I am stressing out or when the sun is really bright.

The important thing for you now is to ease your stresses. Start looking into ways to manage it, whether that’s yoga, mindfulness, meditation, relaxation CDs, etc. I’m 2.5 yrs diagnosed and I can actually feel stresss affecting me. I can be fine, then an hour or two into worrying about something, my eyesight will go blurry. I did speak to my Neuro about Lasek surgery and stuff, but apparently it’s the nerve that is affected, not the bit that actually helps you see, so glasses will be no use.

Start a little journal about your symptoms, then when you have appointments, you will have concrete evidence with you instead of trying to remember all the bits and pieces that are going on. I actually wrote a “feelings” type journal at the start of my journey with MS. I was able to express all my fears and concerns, without feeling like I had to manage another person’s feelings in their responses. I found it really therapeutic.

That @stumbler fella knows his stuff. Listen to your body. Don’t force yourself to do things (going out, staying up late, work, etc.) if you’re not feeling up to it. You will pay the price afterwards. I always have to give myself a PJ and sofa day the day after I do anything major.

We are all in the same boat here, and hopefully we can all give you the support and advice you need right now x

Thankyou all so much!.I’m looking into doing yoga and just downloaded a CD with sounds of the ocean xxx

Well done! Buy some scented candles too- that is my bedtime routine. If you have a Smart phone, there are loads of apps you can get with guided meditations and sleep aids. I love them 🙂

Awww wicked xx

Hey there scarletmartina7, and welcome to shift. I see you’ve met some of the other regulars here, and you’re getting some great advice – none of which I would contradict. However, there is one important thing that I haven’t seen mentioned, and that is that everybody’s experience with MS is different. This is really important, as it shows there ain’t no hard and fast rules about how things are going to work out for you from a remission perspective.

Having said that, my experience with MS in the early days sounds similar to yours – so you might find some reassurance from my story! I had my first MS episode when I was a bit older than you – I was 27. I had ON, and I basically went near blind in one eye. A big difference though, was that nobody suggested MS.

I just took it as an inevitable, and not entirely unexpected (or undeserved!) outcome of my non-stop party lifestyle. It took about 8 weeks before I suddenly realised that my vision was back to near-normal. That was it for my MS for 15 years. I’ve only recently been officially diagnosed, following another fairly minor relapse (I’m now 45). You wouldn’t know I have MS should you meet me (my EDSS is currently 3.0 for the MS geeks out there).

As Stumbler says (and I prove), a MS diagnosis doesn’t automatically mean you’re imminently headed for a wheelchair. And although it may seem difficult at the moment (and you’re going to get bored of hearing this) the most important thing is to keep a positive mental attitude about this. It really does make a difference. You WILL NOT let this disease win.

See you around 🙂

Mark

Hi again 🙂

You should check out my man phoenix. He’s pretty knowledgeable. You can read some of his wisdom on these old posts.

https://shift.ms/p/topic/ive-just-found-out-i-dont-know-what-to-do/
https://shift.ms/p/topic/improvements-in-ms/

Mark

Hi @scarletmartina7…. agree totally with Mark, every1’s experience is different, staying positive is the key, it has always worked for me! I had one episode of double vision when my kids were little.I tried not to let it phase me and just thought ‘here we go again’. I rested and my sight was back within 2 weeks! Never had it since….av been dx for 26 years an am still going so hang on in there!x

Awww.that’s amazing xxx

Welcome to shift.

As you already are probably discovering, lots of good advice from people on here and companionship.

MS isn’t the end of the world, just the beginning of a new one.

Your not alone, stay positive 🙂

Hi @scarletmartina7 the shift regulars have given you some good advice…

and i would echo @aardvark …. everyone’s MS is very different.

When i was recently diagnosed i had all the same questions as you… (they diagnosed me without a lumbar puncture too…) i wanted some black and white answers and of course they aren’t going to present themselves that way.

although everyone’s MS is different we all have commonality… so please do continue to to touch base.

you’ll also find some great info on the links that @stumbler shared… I also recommend that you have a look at MS-UK’s publications and website at some point.

they seem to be a little more forward thinking and progressive in their way of thinking than the bigger organisations (MS society and MS Trust etc…) although at these early stages…. their publications will be of great use to you.

Also…. when i was first diagnosed my local MS society ran a “getting to grips” course…. which was a really good 6 week training course that involved supporting the person with MS and those around them… (I went with my lovely mum!) it was a chance to meet other newly diagnosed people, I got access to information, we had a presentation from the neuro, the MS nurse, other elements of the neuro re-hab team (physio’s, OT’s etc…) we had a local benefits expert come and talk to us… it was really good.

might be worth getting in touch with them….

I wish you well for Monday and I hope you get to chill out over the weekend.

Jones

Hi Scarlet… I’m newly diagnosed too, I’m sorry being new to this too I haven’t got many words of wisdom but wanted to send love and hugs and is a great place here so people will help massively!

Try and stay positive as I am learning there are positives to look forward to through this.. Relax as much as possible too!

Much love xxx

Thankyou all. Have made a massive difference.xxx

I’m sure we’re all glad that it’s made a difference to you. So, now it’s just Monday that you need to prepare for. You’ll update us in due course I’m sure.
Enjoy the weekend, but don’t overdo it!
😀

Hi Scarletmarina7 – I followed this post down the page and it seems you’re feeling progressively more reassured.
When I was diagnosed over 3 years ago, at the unusually old age of 45, I was unable to tell my sister that I had MS, as as soon as I got to the M, I broke down.
Now, you wouldn’t know there’s anything wrong, unless I’ve walked further than I can manage.
I’m still in full time employment, I get out and about and I manage the odd stint in the gym.
I’m not saying it’s gone or gone for good, but it doesn’t mean, as I think Stumbler said, that you will definitely end up in a wheelchair. These are early days for you and you are understandably in shock, but I hope all the replies are offering you some comfort.

hiya.. my ON lasted about a week… the mri did not show that my optic nerves had been inflammed but i had white spots elsewhere on my brain. rest is the key as i just experiencing some blurred vision in my left eye and have been given steroids just as a pick me up. so pleased you found this site. there are so many lovely positive people that will definitely carry through your dark times… love and kisses xxxx

Thankyou and yeah I do feel more reassured. I just want my eye back to normal so can go out again and back to work xx

@scarletmartina7 welcome to Shift I too had the the exact same symptom which led to my diagnosis last May I have had it twice now, the first lasted 6-8 weeks the second approx 9 weeks involving steroids. Hopefully your vision will improve with time and rest and your life will begin to get back on its feet again. If you wanna ask me anything please feel free. All the best 🙂

Were you given glasses to help. I havnt been given . IM just using eye patches on either eye do everything isn’t double. Fed up of them

Yes I had a patch also. I wear glasses anyhow so they also gave me frosting tape to cover the eye that wasn’t working, but to be honest I used neither I just carried on as normal until it passed waking each morning and moving my eyes to see if it had gone.

Yeah every morning I Hope its gone also look in the mirror to see if my eye is straight again. My left eye is turned Inwards looks horrible!

@scarletmartina7, firstly, good luck for tomorrow. I hope that you have a list of questions that you’d like answered.
It would be a good idea to ask for specific plans for your visual problems. It may be possible to use prisms as a way of providing immediate relief, although your Neuro may have other plans.
So, good luck and let us all know how it goes.
🙂

Hi @scarletmartina7 welcome to Shift 🙂 I’m also very recently diagnosed (13th Dec) and I too have double vision and fatigue. I’ve had the double vision since last May on and off and I went through a period of a few months there when it was permanently bugging me. I say definitely get some glasses with prism lenses, a lot of people wear glasses so it won’t seem strange when you’re out and about, which might make you feel a bit better. I haven’t had any treatment yet but I’m seeing a neuro in 10 days time so we’ll see how that goes.

There isn’t much I can add to what everyone has said so far. I find this site absolutely brilliant, I’ve gotten more help and advice here than anywhere and it’s good to know that you are not alone. I know its difficult but try to stay positive and definitely try not to stress it is by far the worst thing! I wish you all the best 😀

Thankyou. I’m seeing my neurologist tomorrow. And yes I definatley want glasses rather than eye patch !

Heya, 23 here too and I’ve had every eye condition related to MS – optic neuritis, double vision & nystagmus. They all do go away in their own time, as I wore glasses when I had double vision the Dr gave me some tape to cover one of my eyes to make it bit easier when you’re out and about.

Don’t be quick to go to treatment, see how your first year goes, you may only have small light relapses which you can work around. It does get easier with time, not that it’s that helpful to you now cause I sure remember at the time of diagnosement feeling angry at anyone & everyone. Take care of yourself the best you can and stay close to those good friends and family members for support x

Hiya. Thanks. Hopefully will get glasses just finding everyday tasks so difficult xx

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