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Newly diagnosed

Hi everyone, just been diagnosed with ms an feeling very anxious and panicky especially about optic neuritis can anyone share there experiences with this??? Emma

Hi Emma

Sorry to hear about your diagnosis.

I was diagnosed in 2005 and have found this site a huge help. We re a friendly bunch and there is always someone here for you to chat with.

My first symptom was Optic Neuritis and I have good and bad days with it. The best advice I can give is to keep as cool as possible. If I start to get hot then I feel the Optic Neuritis worsening. When my sight gets really bad then I find that if I put an ice pack across my eyes then my vision slowly gets better.

I hope this helps you a bit and remember we are always hear for a chat.

Shazzie x

Does it affect both eyes

How long did it take to improve??

Hi Emma and welcome to the forum,

Sorry about Dx and I know it’s all a bit of a nightmare at the moment. I’ve only had Optic neuritis once about 2 years ago which was pretty much what led to me being Dx.

I only had it on my right side and was pretty much blind in that eye, I wasn’t given anything for it,but then again they can only give steroids anyway. It lasted approx 6-8 weeks and my vision returned back to normal and I haven’t had any probelms with my vision ever since. But remember everybodies MS is different and some people never get it, some people do.

Are you having probelms with O.N at the moment? If so you need to speak to MS nurse or Dr or Neuro if you’re concerned.

I understand you feeling panicky, It is scary, especially at the beginning, but you’re in the right place there’s a lot of support on here and if you need extra support you can always ring the support number at the bottom of the page.

I was Dx in 2012 and I’m not going to lie to you it’s been a rough ride for me but remember everybodies MS is different, anyou are NEVER alone with this, support and help is out there.

Take care and ask questions there is usually someone on here to point you in the right direction, and no question is silly, everything gets talked about in here and I do mean EVERYTHING!!

BeckyX

Thank you for the reply I don’t have on but am really worried about getting it I know I am being stupid worrying about it when I haven’t even got it but can’t help it… I just feel really down at the moment and haven’t yet been assigned a ms nurse and not seeing neuro till end of next month so haven’t had the chance to ask questions and find out about it only what I have read on the internet ( which is probably not the best thing to do) xx

Emma I would advise you to speak to your GP tel him/her how worried you are and how anxious you are feeling, he may prescribe you something to help with the emotions you are experiencing at this very stressful time. Lots of people here take something to help with what the Doctors generally call “low mood”. I have had double vision twice and remember being very concerned it would eventually lead to me losing my sight, these emotions are normal Emma but if you don’t tell you doctor he can’t help you. Good luck and let us know how you get on. Jan x

Hi Emma hi but sorry youve had to join us all , i can only say my experiences with ON and unfortunately they are not great i awoke to total loss in my left eye in Jan 2013 29th and later that day fell down the stairs and dislocated my left ankle but England beat Scotland in the Rugby 6 Nations so was quite happy :slight_smile: but deep down i was really worried anyhoos its now July 2014 and the only difference that i recovered was that there is now just white haze which creates double vision so i now permantly have to wear an eye patch , am i worried about my 2nd eye yes very much so but the only advice i can give to you or anyone reading this if you have eye pain get it checked imeadiately as i was an idiot and spent 2 months thinking ah its just strain take the painkillers and keep working i didnt even goto the docs as i didnt want to put anyone out or take an apt that someone may need, sincde that all happened i have had 1 episode of pain enough to wake me from deep sleep and i was rushed up scanned and checked and thankfully the mri showed the 2 lesions and demylination the same as the previous mri and the right eye settled back down. i hope none of the above freaks you out as i have heard and read of people having improvments 2yrs on from initial onset , hope yours settles soon and a word of advice if yours is total loss dont try and put your coffee cup down until you have practiced like i did dropping it 4 inches from the actual table left me with an angry wife cleaning up coffee that went everywhere :slight_smile: all the best sheep

Hi Emma. Dealing with a dx of ms is very difficult. Your body behaves as it wants and your brain is in a whirl with loads of questions, sound familiar? As Jan mentioned, many people with ms take an anti depressant to help them cope with it, myself included. There’s no shame in it, if it makes you able to cope then it’s helping you.

There’s no benefit to worrying about certain symptoms like optic neuritis, they don’t always affect everyone. I’ve probably had ms for 20 years when I look back but have never experienced it and I’m sure many others haven’t either. If you read a lot about MS you’ll find loads of things to worry about but you’ll just make your life worse. Enjoy doing what you can and try to maintain a healthy lifestyle with regards to diet and exercise and you’ll be doing the best for your body. Take care and keep visiting the site, the people here are a huge support network as they experience the same difficulties, symptoms and enjoy the good times you’re willing to share too.

Min xx

Thank you for all your comments

Hi Emma,

I am recently diagnosed too and my first symptom was optic neuritis; I was terrified initially but I havent had such a bad time with it funnily enough. My episodes are really short from the initial pain behind the eye to regained total vision is about 2-3 weeks and I have had it 3 times now, twice in my left eye and once in my right (I know my ms seems to have decided to only give me slight sensory symptoms and optic neuritis not that I am complaining). There are steroids avaialable to help regain your vision but it does not effect the end result i.e. how much vision you will regain and I haven’t chosen to take them because of their side effects (insomnia, mood changes and fever like symptoms) and because I have pretty much learnt how it works with me.

I am not saying it is pleasent, far from, however don’t be scared because like every other MS symptom it varies from person to person. Also with regards to your MS nurse, have you phoned the mssociety line and asked for your local one and contacted them directly? That is what I did and mine is an absolutely sweetheart that has been a lot more of a help then my neurologist eventhough he apparently is one of the most qualified in the country rolls eyes.

I would personally say roll with the emotions initially, don’t jump to get antidepressants or anything like that just yet. I am not saying MS is a good or hapy diagnosis but research is coming on leaps and bounds and there are new medications coming out all over the place. Also remember the internet shows the worst and extreme of all cases, if you google chicken poxs the worst comes up whereas we have probably all had it. As my MS nurse tells me, there are plenty of people with MS leading ‘normal’ (whatever that is) lives who work, travel and have kids. Life is not ending. Also remember when reading these forums there are different types of MS so don’t confuse your situations with others, thats what got me panicked at first but I am slowly but surely trying to come to terms with this all.

If you wanna talk PM me.

Sian xxx

Hi Emma.

I am in the same boat as you. The what ifs and mights are consuming me. Yeh, I can have an ok couple of days, ok as in, if I don’t do much, go anywhere, I am not faced so much with what ms is causing me to experience, but if I do anything, I am happy to be out and about, but, upsets me as I then see my limitations and find it so frustrating. I was climbing hills last year, feel like I’ve lost who I was, and very low. I was going to go to the doctors last week, swithering about anti depressants. I don’t want them, I have had them 3 times in my past, first time they worked, then a few years later I was prescribed them again, and again a few years after that but they did nothing for me, (as in compared to first time I’d ever had them), so I am reluctant to take any now. I know I need counselling, but I am scared to start or I may fall apart. You aren’t alone, but I know thats exactly how you will be feeling.Its the scariest thing ever to go through. If I thought I was never going to get any worse than I am now, I’d be fine, still gutted, but, no worse, i could cope with that. I am fed up of hearing from folk “oh, my cousins hubby has that, he’s fine”…or from the trainer I had at the gym when I told him my ddiagnosis…“I’ve got a few clients with ms.They take something for it, you’ll be ok”…he has been someone who has made me feel the worst.

You aren’t alone.xx

Hiya Emma

Sorry. I got the wrong ens of the stick. I thought that one of your symptoms was ON. Sorry. Try not to worry too much because you may never get Optic Neuritis.

I have it in both eyes but the cool pad does really help. The sight starts getting back to normal after a couple of hours. I have never had it in both eyes at the same time which is good. The main thing is to not panic as it will clear.

Shazzie xx

ThNk you everyone for your comments much appreciated xx

Hi Emma,

Welcome to the MS club. The people on here are very helpful & sympathetic and even if they found a cure tomorrow there are still some people here I would want to stay in touch with. Even if just to find out when Boudica is writing her book.

As for ON - I’ve been diagnosed over 10 years and I have never had it (touch wood) so there is no guarantee you will either. If fact there are no guarantees with this condition.

Take care

JBK xx

Hi Thank you so much for your comment I think I just need to have the attitude deal with it when it happens as iv been getting myself in to such a state about it. Everyone on here are so nice and gave made me feel a bit better about it thank you again Emma

Hi emm defo the way to be as ive been in limboland for 14yrs and only had a dx after ON as stated above and your attitude is great me and wife are the same if it worsens or new things start i and we will worry about them then, live for today and forget tomorrow hope you stays level and i forgot to say a big welcome to the forum and the world of us nutters here , some awesome aweinspirating folks here

respect sheep

Hi ,im a newby , and feel the need to chat today , spent the last 2 days inbed no energy to get up for work or even wash. I tried to contact my MS nurse and was told they would arrange a call back next Tuesday , which reduced me to tears , dont know were to go who to call and whats happening to me, is this normal ? its the 3rd time now and its pissin me off ha ha. Im usually so active and im feeling useless .

Hi Emma

i am new to this site. I was told in June that I have a CIS my brain scan showed multiple and supra lesions. I had a spinal scan done 2 weeks ago and am waiting for the results . I had demeliation 20 years ago . Up until June I led a very active life working and exercising and enjoying my 4 year old after a 18 year gap between my youngest and oldest child. I also feel the same I have a couple of days that are ok ish then back to feeling rubbish again. My youngest has just started school and it’s only a 10 minute walk but doing that requires all my energy. I am totally exhausted and fed up. The thought if what is to come is really scary. I too have to listen to people telling me that they know someone with it who you wouldn’t know they had it! So frustrating .

xx

Hi Emma

Sorry to hear of your diagnosis. I think the first year is the worst and I remember panicking every time I caught a cold or whenever symptoms played up thinking it was going to be another big relapse.

I’ve had MS for over 5 years now and it’s odd the things your body and mind get used to. All those strange feelings, tingles etc … but I’ve never had ON. I have enough trouble with short sightedness and migraines so maybe the MS thinks my eyes have enough to cope with already, ha ha!

The best thing to do is keep coming on here and chatting, don’t bottle things up, there are lots of good folk on here who will do their best to make you feel better and reassure you that these are perfectly normal feelings.

Try not to worry about the What Ifs, nobody ever knows what their future holds and the same is true for an MSer. Everyone’s MS is unique and follows a different path so you will learn, with time, to get on with life and deal with things as and when they happen.

Take care

Tracey xx