Needmorecoffee or anyone else who knows about MS. Please can you advise me.

[dustystar]

I had ON 18 months ago. I had also been suffering from pins and needles/numbness in my left arm and as a result i was referred to neurology. He found no evidence of any other neuropathological episodes apart from the ON and so I decided not to push for further tests at the time.

Since then i have had no worrying symptoms as far as I know but 2 days ago i developed a twitch in my left eye. I've had this before but only ever for a few minutes. This time its been going on for 48 hours and is intermittant.

My question is this. Do you think that i should go and see my GP and ask to see the neurologist again? I realise that myokymia is not necessarily MS related any more than ON is but I don't know how common it is in MS. The neurologist said i should come back if i had another clinical episode but I don't know if i'm getting worried about nothing.

TIA

I can't help you with the info about MS, I'm sure someone will be along soon to help.

I also get a twitchy left eyelid, which is intermittant. I find it is worse if I'm tired or under a lot of stress. It comes out of the blue and goes just the same way. Had it checked, doc says it is nothing to worry about. Sorry it this is totaly irrelevant to your situation and sending best wishes

Thanks MB. I'm hoping its just stress but I'm a bit scared because ON (optic neuritis) is a common symptom of MS so having had that and now getting this is worrying.

fully understand the worry that this must cause you. Fingers crossed that like with me it will turn out to be Stressed Mummy Syndrome.

a quick bump before i sign off

I think if you are worrying about this it is worth seeing your gp to see if he thinks you should see the neurologist again. I have lots of pins and needles and have been checked out for ms a few times so know how worrying it can be. I also have an intermittant twitch in my left eye which I did eventually see my gp about but he was reassuring that it was nothing. I found an online forum devoted to those suffering with eye twitches and people suggested taking a magnesium and potassium supplement and I have found that it has helped alot.

Thanks winetime. I think I will see my GP as I'm only going to keep worrying otherwise. I saw the thing about magnesium and I think i'll try taking that as well.

Hi dustystar. I would go back and see the neuro again. Have you had an MRI? Optic neuritis is most often assiciated with MS and is one of the signs. Having said that, I have had MS for 9 years and had my first optic neuritis attack last year.
Have you had your B12 and magnesium levels checked?
I do get twitches but no-one has ever said they were associated with my MS. Usually eye when I'm stressed to the eyeballs which seems all the time now!
MS is such a weird thing and it can take years and a collection of symptoms to either diagnose it or disprove it.

I definitely think taking the magnesium and potassium has helped my eye so hope it helps for you too. Let us know how you get on with your gp - hopefully he will be able to put your mind at rest and certainly if you don't go , the worryimg will only make your eye twitch all the more ! I hate having these neurological symptoms and quite understand how easily they can make you feel concerned.

Hi Dustystar, I had ON about seven years ago and became obsessed with the odds of 50/50 whether I'd develop MS afterwards. Bought the books, genned up on the internet etc. Freaked myself out about it. I have to say having ON was the most scary thing in my life except for giving birth .

Everything I read said about reducing stress and eating well to give your immune system a boost. I have not really taken that on board fully but I'm getting there.

If you're worried go to the Drs but IMHO everyone gets twitchy eyes from time to time so should be nothing to worry about even with prior episode. My twitches happen if I'm knackered, hungover or ill and sometimes for no reason I can find.

Thanks NMC

I haven't had an MRI or any tests like that. The neurologist just checked me over and asked lots of questions. He decided that the numbness and tingling were not a concern so treated my ON as an isolated clinical episode and said that as tests like MRI are not conclusive I would have no definite answers yet so I decided not to bother.

I've not had my magnesium or B12 levels checked but I will ask my GP about that. From what i could find online it seems that its really common to suffer from this and it is comparatively rare that it is due to MS. If it wasn't for having ON I wouldn't have given it a second thought.

Same for me rioja. I take it your ON was an isolated incident from your post. I was really scared when it first happened but I found out as much as I could about MS and decided that since there was bugger all i could really do about it if i had MS (and at the time no way of knowing for sure either way) I was not going to worry about it. Mostly i don't think about it but as the neuro had said that I should come back if a I had a symptom and that i should do it whilst it was still present I thought I'd better find out whether myokymia could be a concern.

What you are desribing could absolutely be nothing at all, loads of people have twitches.
I guess it depends on how much you want to know if it was MS and what would you do if you did know? I have just been through having an MRI checking for M.S. My symptoms are mild, but the neurologist I saw was keen for me to have tests, results have not been conclusive. In retrospect I think I would have thought harder about whether it was necessary when really when every thing is so mild and may never get any worse.
I really feel for you,why don't you have chat with your GP, it might be better for them to monitor you for a while at least then you would feel that someone is keeping an eye on you?
Worrying it about whether it is or isn't has been much worse for me than any symptoms. I guess you need to do whatever will help to reduce that worry.
best wishes

Dustystar
I really feel for you. Having had tremor diagnosed eventually as dystonia I've gone through all the worries whenever I had new symptoms or worsening of occasional/ongoing ones. I personally if you can bear the anxiety without it worsening would make a concerted effort to do whatever you do to relax, take some supplements perhaps and make sure you're sleeping. If the twitch continues request to see GP or neurologist. I speak as someone who convinced herself she had parkinson's and was so agitated I could not relax at all back then. I had an MRI which excluded the main things and symptoms over time seems to have been consistent with the dystonia. But just occasionally when I'm stressed it can get to me.
Look after yourself.
Winetimeisfinetime - in what form do you take your supplements and where do you get them please?

what is ON>?

I just went into Holland and Barrett and got their own brand chelated potassium 99mg and magnesium 250mg tablets. It was fairly unscientific except I think I'd read about some dosage levels that were supposed to help with twitchy eye and I think they were about the right dose. I take one of each a day and also a multivitamin and mineral supplement. I do definitely feel they helped with the eye twitching and my neurologist had already suggested that increasing my potassium levels would be a good idea for my pins and needles etc. so I thought it would be worth giving it a try.

ON is optic neuritis lulu, which is basically inflammation of the optic nerve.

I'm ok really. I got a bit scared yesterday when I realised that it could be a symptom but I calmed down quickly as theres every chance that its nothing to worry about. I'm mindin the next 2 days (mindee asleep for those of you who frown on using mn while minding) so I have decided if it is still doing it by wednesday i will see GP then.

I know that the tests aren't conclusive coffeeshop which is why I decided not to have them unless i had another clinical symptom. I do think about the possiblilty of having MS from time to time but a lot of that is because I have never regained all my sight in my left eye so i am left with a continual reminder. Some days if I'm tired or its bright i find it hard to focus which is annoying.

I do try to be pragmatic though - whether or not i go on to have a dx of MS, stress and worrying are going to be detrimental to my health. Having a son with SN means that stress is a part of my life unfortunately. Thanks for all the replies

I am learning to be more pragmatic dustystar and remind myself of how much I have got, not what I've lost or may lose. What I've lost is the certainty in my own good health, which I think is a myth anyway, something comes along for you or someone close to you sometime and you have to adjust. I'm seeing my neurologist for review next week, its routine, but I still hate it - it reminds me theres something wrong, just as the tremor does. Today I had to take all my medication this morning due to a stressful meeting as stress makes the tremor worse!
Winetimeisfinetime - the worst thing almost is that my medication means I can hardly touch wine - > one and I have bad /weird dreams and feel bad next day!

thanks for that. i hope everything works out for you x