Hi Long story , woke up 3 wks ago with double vision , went to optician who sent me to eye infirmary 2 days later spent 9 hrs with them loads of tests. Said my eyes were good and said I need an MRI but a long wait. 2 days later whole right side of body was numb , so went to local GP who got me am emergency MRI 3 days later. Conclusion said I have a clinical isolated condition and sent me home , awaiting a spine MRI in 8wks.Since then my vision has not improved and I have pains and numbess in my left side. Question they put ok my discharge. Papers no steroids as symptoms were clearing by there selfs. There not and I’m getting pains elsewhere. Should I push for steroids or will it take its course and wait for the second MRI And will this bloody double Vision go. So for the rant and appreciate its only been 3 wks but I am normally very active and being sat around is unbearably Any way I’m a45 year old man and look forward to chatting with you
Hi and welcome. Did they say that you had optic neuritis? Have not had that myself but have heard folk on here say that optic neuritis is helped with steriods. Neurology seems to be for many a watch,wait and see what else happens before a dx is made. You are obviously concerned about MS otherwise you would not be here. My advice would be to go to your GP and ask to have range of blood tests for vitamin B, vitamin D etc. When you get the spinal MRI you will probably be seen again by neurolgy with results. Mind you be prepared, people who manage to get a dx within 6 months are rare. Usually it takes ages - I had an ‘attack’ in 2008, got first MRI done in 2011, secone MRI in 2012, Lumbar puncture in 2011 and 2012 ad I am still waiting for dx.
Talk to your GP about steriods. He may give you a 5 day course.
Thanks Yea neurology found something on my brain MRI. And they already mentioned MS they have taken loads of blood tests it’s all happened so fast I’m only just coming to terms with it. I have a appointment with my GP tomorrow I just want to get my vision back I love fishing I and motorbikes can’t do either yet Sorry it’s taken so long to get your dx and thanks for the quick reply
Good luck with your GP Grey, it sounds like you’ve had quite a scary time
I’m also new, my symptoms have been more along the slow-burn lines, the MRI only came about via my Osteo (I’m a fitness instructor so I understand your frustration!). By the time I saw the neuro consultant (last week) I was actually embarassed by how bad my balance/co-ordination had gotten. I had my husband with me and I think it was an eye-opener for him
From what I know about MS, it can really impact with your vision. The funny thing was that I was referred to an opthamologist last summer after an eye test. I remember at the time thinking it was a bit odd as I didn’t have any noticeable vision problems (well, apart from slight vertigo!) but the opthamologist said I was fine,
I hope your appointment goes OK, I’m about 99% sure now that the stress of so many random things over the last 18 months ascerbated the situation for me so as tough as it is, try to relax and take some ‘you’ time.
Hi Gray and welcome aboard Steroids are usually best taken early on in an attack, but 3 weeks isn’t long so if you wanted to push for them, they may still help to shorten the attack. There are no guarantees though: they don’t always work and they can have some nasty side effects. They also don’t change the outcome, ie your level of recovery will be the same with or without steroids. If this is the only time anything remotely like this has happened to you then there is a decent chance that it won’t ever happen again as there are various one off conditions (eg ADEM) that can cause MS-like attacks and about 50% of people who have an attack that looks like it might be the start of MS never have another one. So fingers crossed! The odds are very good that your symptoms will gradually improve although this generally happens much slower than we’d like! If the double vision is really troubling you, then you could ask your GP for a referral to ophthalmology to get some practical advice and help, eg exercises, wearing a patch or getting prisms on your glasses. I know how frustrating it is to be stuck in the house, not able to get on with doing normal stuff, but there’s just no way of shrugging this kind of attack off. All we can do is rest lots and try to be patient: recovery will come, albeit in its own good time Hopefully sooner rather than later! Karen x
I’m also new here but my symptoms have been a real slow-burn effort. It must be pretty scary it all happedning so quickly,
I hope you get on OK with your GP and make some headway. Don’t rush onto the steroids unless your GP thinks that’s what you really need - the comedown is crap to put it bluntly (sorry, that’s a personal opinion!) From what I understand they keep working though, so I’m crossing my fingers!
Funnily enough, I was referred to an opthamologist last year and I wasn’t sure why at the time, as I didn’t have noticeable vision problems (aside from vertigo) and the opthamologist didn’t find any problems with my sight.
I truly do understand your frustrations. I’m about 99% certain that the stress caused by all my random symptoms ascerbated things for me, so do your best to relax
Good luck with the doctor
Well been to GP today Doesn’t want to start me on steroids just wants time to do it’s thing Have my second MRI in 6 wks told me will get a DX then Going to specsavers in the meantime to see if can sort eyes out temporary with prisms So frustrating sat around , I know it’s only been 3 weeks but used to working long hours longest I’ve ever been of work
I doubt Specsavers will be up to the task - most of their staff aren’t qualified to test that sort of thing Best to ring round and explain what the problem is. Anyone who seems to suggest it’ll be dead easy is probably woefully ignorant of the problem! Kx
Hi Gray,a worrying time for you,and I/We know it’ll be driving you nuts, but you need to try and distract yourself.Get the GP to explain why you cannot have 'Roids,preferably IV. Actually, if you have a decent Out of Hours Service you could get in touch and you might meet a doctor who isn’t as slow on the uptake and worried about their bonus.Three g of Methyldoodah for three one hour infusions costs about £30.
With the benefit of ‘handy hindsight’ I know that the three day course of IV 'roids I was given before formal diagnosis straightened me out for about six months.Your first course is the best you’ll ever have,but beware of hoovering at 03.00 o’clock.Oh,if anybody asks about driving tell them you aren’t, shouldn’t really be anyway,'cos Swansea love to suspend licences.
Thanks Not even attempting to drive , update the pains in my right side have reduced to pins & needles and my head is far less numb still have double vision except when I look down. Does this indicate heading towards the end of this relapse its only been 4 wks And has anybody suffered double vision but got there sight back completely Thanks
Sounds like things are getting better so yes, possibly going into remission.
People vary in how much they recover from symptoms, including double vision: anything from 0-100%. Once it’s stabilised, you can hopefully get prisms to correct whatever’s left, if anything.
Well gradually feeling better , right about specsavers after 2 long conversations with them explaining everything made appointment. 40 mile drive got there , 5 mins later " sorry we can’t. Help you , you need to see your GP " Anyway , as I said I’m feeling a bit better , but when I first wake up I feel great,no double vision or pins’s & needless but after being up for a hour or so it all returns. Is this a normal symton Cheers
well pins and needles were my first symptom and were helped by thiamine
now i still have them all the time, dont even notice it any more
i recommend a vit b complex because these have thiamine in them
also Vit D is known to help ms
you will have to learn to relax and be kind to yourself. sounds like you’ve been driven!
Yea have been driven Really down today over the last few days the numbness in the right of my head and arm and also the Hug had disappeared but today woke up and it’s all back. Does this mean I’m in for a futher relapse. Only got a few hours sleep last night and its my mums funeral tommorrow Could it be stress Thanks was so hoping was on the mend
Yes. Double vision was the thing that got me an MS dx (it was my second relapse).
It was seriously weird at its peak - crazy criss-crossing of everything that should have been a straight line. It went away completely. It sounds as though yours is starting to resolve now. Let’s hope it’s quick about it.
I am very sorry that you are having all this health worry on top of a bereavement. That is just unbelievably tough. I hope that everything goes as well as can be hoped tomorrow. I am very sorry for your loss.
Yes, it could be stress. It will hopefully improve soon again. Very sorry about the loss of your mum. Kx
Thanks for the kind words folks Hard day today
I lost my mum 17 months ago and it gets easier but I’ll never stop missing her or loving her.
I’m sure the stress will be affecting your symptoms for a while - mine were very badly behaved for a while but they did settle again and despite my worst fears I didn’t relapse at the time.
Take care, I find chocolate works best (although when I’m really sad even that doesn’t taste right )
Well said goodbye to my wonderful mum today. She knew I loved her , and it wasn’t as bad as I thought ( still hurt like hell tho ) Now home and gonna drink a bottle of wine to myself , Thank you so much for the kind words people .
Sending much love and hugs. I hope you enjoy your wine tonight and remember the happy times.