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MS - Swollen optic nerve

(11 Posts)
tillytown Sat 26-Dec-15 23:58:24

Sorry if this is in the wrong place, I have no idea where to put it.
Anyway, I woke up on Christmas Eve and was basically blind in my right eye. I went to an eye hospital A&E, had hours of tests, and was told I almost definitely have MS. I'm having brain scans next month, and was given steroids for my eye, but I don't really know anything about this disease. Is there anything I can do to help heal myself?
Yesterday the left side of body went numb, and my hand has had pins and needles all day. I've been searching Google like crazy, but I really would like some real life help. Any advice is very very welcome.

girlsyearapart Sun 27-Dec-15 00:01:47

Hi I have MS and am happy to talk to you via pm if you like.
I was diagnosed in similar circumstances 15 years ago.
You can't 'heal yourself' but there are things you can do to help yourself.
The rules are not to get too hot, too tired or too stressed.
I'm rubbish at sticking to the rules thoughsmile

Maiziemonkey Sun 27-Dec-15 00:31:53

Hi tilly I am afraid I don't have much knowledge of the condition but I know a couple people who have overcome many episodes of this and so take heart that much can be done to help manage the condition and get the best possible outcome for you, obviously there are some things that cannot be changed once lost, but there are many people with much knowledge and you are not alone.

Myself I have had a fibromyalgia dx recently and so I know that a lifelong dx can be really scared and shocking. A friend of mine who has endometriosis and whose husband has MS advised me to give myself time and room to feel however it makes you feel- you don't have to follow anyone's expectations on that, including ones, own as we can sometimes impose rules on ourselves about coping with tough stuff like this.

Googling may be a bit scarey - and a lot of places have contradicting info. Getting connected to these forums is good because people can give very unto date advice, my own experience was to do same and I got valuable support from the back thread here when I thought it was back problem, and I still post and read there sometimes. Real life support is important too, hope you have some friends and family close to you that you can share with, it's worth its weight in gold. Maybe ask at your next spot about what ongoing support is available . Good luck and hope you get some good help with this 😸

redpriestandmozart Sun 27-Dec-15 17:32:15

I have MS and what girlsyearapart says is spot on, don't stress please. The steroids while not the nicest thing in the world will make a difference although maybe not right away. I find that immediately I feel great, get worse for a while then massive improvement. Your optic problems will subside as will all your other symptoms, that is the nature of the disease, ups and downs. After a spell like this I went onto disease modifying drugs and have done much better. You are very welcome to PM me too. Joining a few facebook pages has helped to talk to people with MS. I would recommend Ladies with Lesions and Women with MS both are private groups with a lot of information and help.

Jux Sun 27-Dec-15 18:00:37

Hi, Tilly! I have ms too. It's not the end of the world, that's the first thing to remember and among the most important.

Something which has helped me is tai chi. It's kept me mobile and helped my balance a lot. Ask the ms nurse, when you get a dx. You need a specialist class as we all need to sit down in between exercises and have a rest! Also, the teacher needs to be able to modify exercises for those in chairs or who can't stand up for long etc. Ours is a bit of a support group too, though we don't have tea and cake! We swap knowledge of medications, treatments etc, and gossip about neurologists - this one's lovely, this one never meets your eye or only talks to your husband etc.

It's nice to be with a bunch of people who understand when you walk out to go to the loo, or who don't mind if you just fall asleep in the chair, and who don't make you feel inadequate because life is a bit more exhausting for you or you forgot something.

tillytown Sun 27-Dec-15 19:51:27

Thank you all, as soon as I can see properly again I'll definitely be pm-ing you smile
I'm going to check out those Facebook pages now, thank you again

girlsyearapart Sun 27-Dec-15 23:05:30

I probably should take more care of myself like you seem to jux I had 4 kids in 5 years then ran the London marathon..
Now have moved on from relapsing remitting to primary progressive though waiting for a definite diagnosis from the neurologist in a few weeks. Optic neuritis in February hasn't shifted. 15 years is apparently the right time frame though to move on.

tillytown Mon 28-Dec-15 16:57:55

girlsyearapart 11 months and your eye hasn't cleared up yet? I was hoping it would be gone in one/two weeks

girlsyearapart Mon 28-Dec-15 20:39:24

I have had optic neuritis several times now and this is the longest it has taken which is why the gp thinks I have probably reached the 15 year cycle and moved on.
It gradually gets better and the steroids help it getting any worse so it shouldn't stay as bad as it is now for too long for you.
Sorry didn't mean to scare you.

girlsyearapart Mon 28-Dec-15 20:42:14

Though I'm afraid you'll be lucky to be rid of it in one or two weeks.
When do you next go to the doctor?

heckythump01 Wed 30-Dec-15 17:27:08

Hi Tillytown! im recently dignosed with ms and optic neuritus was my first sympton it took a few months for my eye to be 90% better, steroids defo helped im stubborn and should have started them sooner! your MRI will tell you more........................! again feel free to pm me. Have you access you private medical insurance? if so defo use

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