New diagnosis - mild Ms

New diagnosis and before diagnosis
1

Hi, I am a 32 year old female and have been diagnosed today with Ms.

I had a severe case of optic neuritis in December and it got confirmed that’s what it was with an mri. I also have 3 lesions on my brain with inflammation.

I then accepted the lumber puncture which is the last thing I needed to confirm Ms. And I have current inflammation but they don’t know where. The only thing I have going on at the moment is my eyes still aren’t right and I feel exhausted.

I have been told my Ms is mild at the moment and I am being referred to an Ms consultant.

Please can anyone tell me how they felt after getting the news?

Family are trying to be positive by saying there’s so many treatments out there and to not let it take over my life. I feel like I shouldn’t be upset and that I’m an attention seeker being upset about it in front of people?

I am a very anxious person and also have 2 young children to think about so my mind is going mad thinking about everything.

I am very new to this forum so I hope I haven’t gone on too much. Thank you

Laura

1 Like
2

Hey Laura,
Right now you need stop > breath > be kind to yourself ~ todays news regarding the DX I’m sure will have knocked you for six so once again stop > breath > be kind to yourself.

Your head has proably gone into overdrive (thats normal) with 1001+ thoughts / Q’s spinning around so 1st thing 1st get yourself a note pad and keep it close to hand and as and when Q pops into your head write it down no matter have big or small it may be.

I’m guessing that right now your emotions are all over the place and that is completely normal; I knew I had MS before I got my DX back in 2000 but the day my neurologist confirmed MS I felt like I’d been kicked to breaking point but one thing I told my neurologist was that ‘I will control my life and MS will not control me’ and 23 yrs later I stand by my comment!

Your diagnosis will naturally be a huge shock to both yourself and your family and loved one’s and even though right now your ‘thought’s’ may not be positve which is understandable they are right regarding treatments but they also need to appreciate that right now todays diagnosis will be in your thoughts non-stop (again thats completely normal) but as a mum to 2 young children try to allow them to take your mind off everything MS just by being themselves and you being ‘mummy’.

You said you feel like you shouldnt be upset and my Q is why shouldn’t you; if you don’t get upset then I’d say 'girl you ain’t normal (what ever normal is) you need to digest todays news which will take time and it will play with all of you emotions so just remember yet again be kind to yourself and give yourself a break and right now you will just want some of those 1001+ Q’s answered rather than being an attention seeker.

I’m sure you’ll be put in touch with a MS Nurse which will be a good support for you and I’m sure they will want to see you so I’d say to take your note pad with you along with a loved one as its another set of ‘ears’ which I’m sure you would appreciate and it may also help them in supporting you and help them.

The thing about this forum is each and everyone one of us on this forum with a confirmed diagnosis on MS have been in exactly the same position as you so right now ask Q’s, ask for support, have a rant

1 Like
3

Hi. Thank you so much for answering.

If you don’t mind me asking what was your reason for being diagnosed?

Did you have optic neuritis too. I would like to find someone I can talk to about that aswell.

The inflammation has gone down and my vision has improved but I feel like my eye is 3 seconds behind with any movement and my spacial awareness in the eye that was bad still isn’t great?

The neurologist said that I will experience tiredness which would explain why I have felt tired all the time.

Do you know why that is and if it will go away? So sorry for all the questions.

So glad to hear that you’re still going strong 23 years later. It’s nice to hear some positive things.

The Ms nurse will be contacting me within 8 weeks. But again very nervous about that as I don’t know if medication has any side effects?

I have a really painful left knee. Feels like I have sprained it. So any little pain I’m now getting I think it’s to do with my Ms.

Thanks so much again for replying to me :heartpulse:

5

Hey,

At the first poster said, honestly just take each day as it comes. I had optic neuritis twice and was the reason I was diagnosed. First in December 15 and then again in march 17. If it is any consolation, I’ve been relapse free till this year, currently relapsing with numbness in my left side, so that’s 5 years.

I promise you everything looks much better after you know what is going on. I also have 3 young kids (well, 15, 15 and 12!). Very, very happy to discuss optic neuritis and help calm your anxiety. You’ve got this. It’s shit now, but it will improve.

6

Hey Laura!

29 here. Many symptoms I had previously that can now be explained by my Ms diagnosis but what got me the diagnosis was Diplopia and vertigo for 3 months! And I have a similar sensation where my eyes feel slightly lagging very odd sensation!

1 Like
7

Hey Laura,
With regards to my ms I first had issues late 80’s/early 90’s with numbness in my hands and got referred to the hospital but the appointment was all a little ‘dismissive’ and then numbnese went.

I did have some other instances of in the 90’ tingling & numbness for very short periods of time and then I had issues of numbness in my legs so I went to my gp practice where the doctor told me it was ‘all in my head’ but I knew it wasn’t but eventually they said they’d refer me; it never happened!

My work’s company chairman knew I was having some issues and told me that they would pay for me to see a neurologist along with any required tests and I received my dx late 1999 early 2000 and I started the rebif (beta intereron) treatment within 5-6wks as a self funding until NEICE changes ment I could then recive the treatment under the NHS at that point my neurologist then saw me under the NHS rather than privately.

I’ve had numerous spels of ON but I’ve only had x1 were it caused blurred vision in one eye, most of the time it just causes mè a great deal of pain when I move my eyes (makes me want to take my eyes out and let them soak in warm soft water to then rest on a fluffy white cloud ~ crazy I know but that’s me!).
Unlike you I’ve not noticed any delay in my vision vs. movement or spacial awareness but last year I moved from reading glasses to varifocals but I just put that down to being 54yrs young.

One thing I do find a day to day challenge is brignt light; be it natural daylight ~ I do love my Gucci, Chanel, Prada sunglasses or sitting at home watching tv with no lights on other than a light in the hallway.

Fatigue is something that those living with MS can and do experience; its something that I’ve experienced but for me its at its worst when I’m having a relapse and right after and then it isnt an big an issue.

Right now everything regarding MS and your MS is very new to you and its natural to feel anxious and nervous; each and everyone of us here on this forum diagnosed with MS has felt anxious, nervous so you are not alone but as I said in my previous reply make sure you note down any issues big or small you are experiencing, any Q’s big or small, trivial, major, minor, daft (there are actually NO daft/minor Q’s…if its in your head then its a Q that you need to ask) so that you can discuss them with the MS nurse.

With regards to medication the MS nurse and the neurologist will be able to discuss options with you, you could have a look on this website as they are all listed and if you have a look in the coming wks before an appointment with a MS nurse as it might help you prepare regarding medication conversation.

Following me having what i considered a large relapse last year I have changed my DMT (treatment), for over 20yrs I remained on the same treatment and on the whole I think it worked well and I didn’t experience any side effects which in my head was really positve. I’ve changd DMT and tomorrow (2.3.23) I’m going for the 2nd part of infusion; 1st infusion happend 2wks ago and I had absolutely no issues and I haven’t experienced any side effects which I’m seeing as positive.

As your diagnosis has only just happened I can see why you might think the issue with yor knee might be MS but it could easily not be MS; for me I’m the opposite in that I dont think things are MS and could just be being 54, having a thyroid issue, going through the menopause, having a high heart rate and now having a gyne issue…

I hope your MS nurse appointment doesn’t take too long to come through & I hope you don’t allow everything MS overtake you ~ find some inner strength and take care of yourself
Vicky

8

Hi, Thank you for replying to me. This is the first time I have been able to explain how my eye feels and someone else knows exactly what I mean. Is there any time when your vision gets worse?

9

Thanks for replying. It’s so frustrating isn’t it :pensive:

10

It really is as most of the day it’s absolutely fine but then all of a sudden I may be farting my eyes around real fast and all of a sudden there may be an instance where they feel slightly behind! But to be honest I haven’t yet noticed if it’s when I’m tired that it happens or maybe something else like too much light. I have noticed I do ten to have a little headache when it happens so perhaps that? Do you have a headache or anything else with it?

The double vision I had was awful and to be honest I’m frightened to have it again once it came on it was there (slowly getting better) but for over a month and the first 2/3 weeks I felt so sick and couldn’t really do anything not even read or watch the telly it was so boring!

11

Yes I do get a headache with it actually. Just below my eyebrow.

When I first started getting symptoms of it I had a cold and thought it was sinusitis. Then my eye was agony to move and I felt sick. Then my eye got a bit blurry. Almost like I had someone else’s glasses and it was making my eyes feel horrible? Then it got worse to the point I couldn’t drive.

I’m so scared of getting it again too. I have a small scar on the back of my eye and they said that might heal in time but I might not get full vision back. I struggle with really bright rooms too. And if there’s lots going on in a room I can’t focus.

Have you been offered steroids to help with the inflammation? Or is it starting to feel a lot better? I do feel for you. Optical neuritis is nasty :pensive:. Looking out of your eyes all day everyday when they’re not right is draining isn’t it.