This is the first time I’ve done something like this, but I hope you can help.
I’m currently waiting for an MRI scan ( which scares me) as I’ve got optic neuritis and was told I may have MS. After reading the symptoms online, I’m pretty convinced that I probably do have MS and now I’m in a constant state of worry.
I was told a couple of years ago that the pain in my legs and the twitching was due to Restless Leg Syndrome, but after the problem with my eye, I think there’s more to it. I’m 23 and have had problems with anxiety for years. I’m particularly conscious of becoming I’ll as my dad died only 2 years ago of cancer.
Basically, I’m just looking for some positive, but honest support as articles I’ve read online seem to vary. Although I feel like I get a lot of symptoms, I’ve had nothing yet that’s majorly interrupted my life and most of the time is heightened when I’m stressed… Like now haha. I do get pins and needles, aches and pains, the odd numbness (doesn’t last more that minutes) I need to wee a lot (sorry TMI) and I’ve also had quite bad headaches in the past which could be to do with my sinuses, as I don’t think this is a MS symptom? I’m currently waiting for blood test results too about my b12 levels.
My symptoms in the past have always been dismissed by doctors because they either put it down to stress or my dad passing away. I went along with it until I lost my vision in my left eye and the diagnosis around that still is all frustratingly wishywashy … Anyway! Enough rambling from me hehe…
How does everyone cope? Is this going to ruin my life or is it really something that I will be able to manage? Suddenly my future seems so uncertain and every tingle or sensation I get at the moment is sending me into a panic attack. Have you had this also?
please don’t stress because as you have realised it only makes things worse.
ok so i’ll talk about the worse case scenario, if you have ms.
it is not a death sentence.
you are very young.
my friend’s daughter was diagnosed at your age and continued at college.
she is now an occupational therapist with a husband and two young children.
believe that you can still do anything you choose and keep a positive mindset.
make sure that you always have something to look forward to - you will have to book these - i spent most of my spare cash on tickets to live bands (i can get a free ticket for a carer - a friend)
if you drive you will have to notify the DVLA (nothing to worry about - you will just be put on a 3 year licence)
eat well and healthily.
exercise regularly.
diagnosis is quite a long slog so you will have to be patient.
your symptoms can be managed with medication.
bladder issues are fairly easily managed - you can self refer to the bladder and bowel clinic.
your anxiety can be helped by mindfulness meditation - ask your gp if there are any courses in your area.
I really feel for you and I can relate to how this has all played out for you. I was diagnosed when I was 33 and it came at a time when I was very ill with anxiety and depression. I think the stress of all that brought on a big relapse which landed me in hospital. But I got steroids (never again, that’s a different story) and slowly I recovered. I’ve had all sorts of relapses and symptoms including Optic Neuritis where I went completely blind in my left eye, numbness up to my waist, dizziness, frozen feat, stiffness in legs, and the list goes on! The heartbreaking part was that I was just at the age where my boyfriend (now husband) and I were considering starting a family Great timing eh?! I thought my life was over, BUT slowly I got back on my feet and got the depression and anxiety treated and since then I have got married and now have a wonderful 2 year old daughter.
Please don’t worry, it will only add to your stress. Life will go on for you. Carol’s advice was very good…eat well, take gentle exercise (I’m not so good that this part, oops!), and meditate daily. I don’t cope with stress well at all and it seemed every time I was stressed I would have a relapse or my symptoms would flare up. So I went on a Vedic meditation course and its been the best thing I ever did. My stress levels have dramatically dropped and my anxiety and depression is SO much better.And more importantly, I haven’t had a relapse or any significant symptoms in over a year since I started meditating, touch wood!
You will manage, you may have to do things slightly differently, for example if I have a big day or weekend planned I have to make sure I allow myself a rest day afterwards. And I make sure I take regular leave from work so I get a regular break (I try to do this every 6 weeks). My parents also come down from Scotland quite a lot so they can help out with my little one so I can get a proper rest. And my husband is great, he does all the cooking and helps with the cleaning. You just have to plan things out a bit more but its all doable.
I wish you well, and remember your not alone. Feel free to PM me if you want to chat,
Thank you Lisa. So stress is definitely to be avoided! I’m sorry you had such a rough time, but also hearing how you’ve turned it all around and started a family is so uplifting. I’m pleased you’re feeling better now thank you for telling me your story. Take care xx
the others have given you some good advice. The person who can help you the most is looking at you in the mirror. The sun will still come up tomorrow weather we like it or not, so try and stay as positive as possible and take it one day at a time.
There are now numerous drugs that can slow the ms down ( wen old farts like me were diagnosed we were just told to make the best of it !) .
If and when you are diagnosed i would also recommend seeing a neuro physio. Even if it only once every few months. the changes to your body can be very slight and subtle but over time they add up. The physio will pick these up and help you with exercise to correct them and keep you active.
Always remember what ever happens people on here will listen and help.
HI, I too have been recently diagnosed and although it is a crap hand to be dealt it is not as bad as some of the other things that I could have been unfortunate to get.
I too had optic neuritis, which cleared up in 6 weeks, my body aches for no reason and on other days I don’t feel bad at all. I have returned to work, although currently still on short hours, and am just glad to get back to a bit of normality. Until I get to the stage where MS is restricting me from doing things I will always feel positive. The week I was diagnosed I had a friend who dad had a major operation for bladder cancer, a local lad, only about 18 yr old died in a accident playing rugby and the local MP was shot dead so that sort of put it into perspective.
As well as going back to work I am doing more things with my wife and family, camping etc and am getting to see people who I haven’t seen for years. So whilst I can still do these things with the support from doctors, family, friends and work I will remain positive.
Good luck and remember to keep your chin up as things could be a lot worse.
Thank you. It’s good to hear how other people are keeping positive! You’re right, now I’m getting a better understanding of MS, it’s becoming easier to put into perspective.
I think the best advice you’ve had on here comes from Carole (she’s very wise!)
I would only add to this to say that if you do indeed have MS, it’s likely to be the relapsing remitting variety, judging from what you’ve said about potential early symptoms you’ve experienced.
And if so, then at least there are many disease modifying drugs available to you, the aim of these is to reduce relapses. In the best cases, people are relapse free for years and years. Therefore serious disability is not the inevitable result of an MS diagnosis.
And also, come back to us here with any further questions or worries, there’s usually someone who has either shared your experience or can simply empathise.
I am sorry that you and all your family have had such a difficult couple of years, and I am particularly sorry that you should have the major stress of ON and wondering what has caused it.
If you do turn out to have MS - and I hope you don’t - it will be rotten news, no two ways about it, but it will not be the end of the world. Life will go on, you will find a way of dealing with whatever comes along, as we all do.
I have had it for quite a few years now (dx aged 37, I think) and I wasn’t too thrilled about it, to put it mildly. For what it’s worth, am probably happier now than any time in my adult life, despite MS having caused me quite a lot of bother and now restricting my life in ways that I never thought I would be able to cope with. So there you go. That all might change tomorrow, but then so might anything in life, at any time, MS or no MS.
just adding mine mine to the voices saying try not to worry. With luck it won’t be MS - and you can forget all about us and this board However, if it is MS there is still lots to be positive about. I was only diagnosed in June 2016 (ages 36) following an episode of nothing worse than numb toes in February. It was a bolt out of the blue and knocked me sideways - but, having learnt more about the disease, this is what I’m telling myself.
(1) It is not the disease it used to be. The use of MRIs (since the mid-80s) has allowed people to understand more about this disease than ever before. Whilst there is still no cure, there are lots of disease modifying drugs for RRMS (which 85% of people with MS are diagnosed with) which can delay the course of the disease - and the newest ones (e.g Lemtrada which was only licenced late 2014) may even halt it if taken eay enough. There are also lots of new, even better drugs in the pipeline - including ones for the progressive forms of the disease.
(2) It is not a fast track to a wheel chair in most cases. Something like 80% of people with MS don’t need a wheel chair 20 years after diagnosis. There are lots of people with MS leading full, happy active lives - fulfilling career and family ambitions and doing crazy things like running marathons. And there are lots of amazing people in here in wheelchairs still leading fabulous lives full of fun adventures and cruises showing that even if that comes to pass, there is still a lot to be positive about.
(3) There are things you can do to help yourself - exercise, sensible diet, vitamin D3, sleeping properly and trying not to stress included (but never blame yourself about your MS)
(4) relapses and symptoms can in most cases be treated with drugs/ steroids / physio/ complimentary approaches like oxygen therapy - so don’t suffer them.
(5) this board (and Shift:MS which has a younger focus) are great places for support and advice - and just letting of steam (especially if you haven’t told too many people in your real life about your diagnosis)
i decided I wanted to battle my MS head on and opted for Lemtrada as my first DMD. It’s early days (I’m not quite two weeks post treatment) but I’m feeling strong and optimistic about the future.
Very happy to to chat more about my experiences if you want to PM me. The contact I made with people having gone through similar experience in the diagnosis phase really helped me accept my own condition and how I wanted to manage it.
You’ve been given loads of great advice, so I’ll not add to it too much. I was diagnosed in April, but probably had it since I was 29 as had transverse myelitis followed by optic neuritis back then. As these two were diagnosed in different hospitals, the dots were never joined up and I’ve gone along in blissful ignorance until Jan this year, when I developed double vision. I am not on any treatment, as my symptoms are few and far between and mild. I don’t expect this to continue and early started treatment lessens the chances of relapse, but it shows there are degrees with how you can be affected. I really hope the outcome is good for you, but there is loads of support on here.
I had the same symptoms as you when I was 18, took nearly two years to get diagnosed with MS, I am 24 now and still have bladder/bowel problems and fatigue problems, its not easy but you learn to deal with it, you have come to the right place, any questions you have about MS you will get many great answers from peoples personal experience
MS can be the worst thing to happen to you OR it may be an opportunistic disease that knocks you off your feet from time to time. There are some quite effective drug therapies that will stop disease activity for years.
I wish I’d seen a neuro physiotherapist. Now, I have a new knee which has been wonderful. The ms didn’t let me recover well. I’ve had such a nice summer of cognitive problems, unable to make decisions and follow conversations. My right leg went numb (no worries) and fi developed urinary incontinence, which has been awful, although that has improved lately.
This weekend was the first week of rehearsals for concerts. I had the opportunity to sing in an opera chorus and had to say no. I was worried about fatigue. I wish I’d done it. Bryn Terfel was singing Falstaff. My minder/husband heard the great man warming up and he said it was life changing. Don’t miss out on opportunities. You can have a life with ms and quite a good one. I should have joined that chorus. Damn, damn.
Never mind. I had a great music-filled weekend. My whole life has been music. It is inside my bone marrow. I lost it for years. I am so glad it is back in my life again.
i was diagnosed in late 2000. My balance isn’t good and I fall more than a normal person does. Ow. I’m still here, bruises and all. I hope you have good luck with your ms. Yes , it sucks. Quick! I have to pee again!
SJ X