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On the hook forever?

Hello there! I am 29 years old, and heard of MS for the first time 7 years ago, after optic neuritis in my right eye. It was most terrifying week of my life with enormous headaches which led to almost full loss of vision in my right eye. I was hospitalised then, and treated with steroids (?). After that, my vision was almost completely restored. With suspicion of MS I was tested. So, I had brain MRI (some abnormalities for young age and 1 small lesion in white matter (non specific)), failed VEP- no response from my right eye (left eye normal), and I don’t know how to interpret my results for spinal tap - I’m not sure, is it positive or negative, my neurologist did not explain. It’s written in my results - ologiclonical bands are very slightly visible in Cerebrospinal fluid, no ologoclonical bands in blood serum). Also my Neuro exam was slightly bad in the right side (ataxy). With all those results my doctor said that for now, they can not confirm or deny MS. So I moved on with my life. Had baby boy, and at some time after his birth had to go to neurologist due to some short-term symptoms like tingling in my fingers, numbness in one side of my leg and so on… (I can’t even remember specifically why I got an appointment, but I just felt that something is off.) So… after the second MRI no changes was found in my brain MRI, EVP showing damage in right (nothing weird knowing my history with neuritis). My neurologist said there is not enough to diagnose MS, but they will not deny it as well. It’s over 3 years after my last visit to a neurologist, (they recommended me to show up after 6months, but I forgot to go). Problem is there always something there with me, like I often bump in to things(like quite often miss the door and bump in to wall :D), drop something, have hard time stay motivated and focused, my left side always tired(mostly hand), and some other strange feelings in my body that comes and go (nothing severe). All those things over time become part of me and it’s my normal. I think of what would be if I did not known about MS, would I still notice those things? So I always return to MS time to time, if I have some issues with my health, questioning myself,- “may it be MS or is it normal?” :smiley: Finally, my question is - What is needed to deny MS eventually? Or to confirm? Another attack? I don’t see any reason to get another MRI as I’m feeling good enough, no more attacks, since optic neuritis. Maybe someone has similar experience to share? Or any thoughts on that matter :slight_smile: And sorry for my English, it’s not my native!:slight_smile:

if you want to be diagnosed then see the neuro.

if you feel you would be happier not knowing, then don’t.

it’s like pandora’s box - once it’s open, all sorts of stuff comes out.

the meaning of the word “sclerosis” is scarring. (lesions)

more than one is required for diagnosis (the multiple part).

your english is good, no need to apologise.

Thank you for your answer. The comparison with pandora’s box is very accurate… sadly it was opened long time ago. When person is thrown somewhere in between “maybe and maybe not”, he always comes around to the same place. “If you want to be diagnosed” - no, I surely don’t want to be diagnosed, I want to be healthy. But it’s not the same, to not know and to be healthy. On my last visit to our local MS center, I was sure, that if second time my MRI would be clear - I would be released from the hook. And the result was the same answer as few years ago. I don’t quite understand what is keeping me in that list of ‘possible MS’ers’, - as I mentioned my first MRI showed only one lesion (non specific - which I think means that it is not specific for MS, so it could be anything else). And second MRI after ~ 2 or 3 years was “with no significant dynamics”. And now I’m debating with myself to live my life and ignore the fact that somehow in some years MS may show it’s face and it can be too late to get medication, or try to catch it while it still hiding. But I may be catching something that’s not even there. And it’s very stressful for me to go over that path again, it will take 2 to 4 months to get results. If there would be possibility to hear “oh, your head is clear for over 6 years now, you don’t have MS”, I would do the testing. But I’m afraid that I will be stressing for some time to hear the same - “we are not sure”. (I don’t think they can find anything in my MRI, as I have no more attacks or serious health problems). But I’m not ignorant too, I understand that it is possible that I may have it, or may develop it. I think I am just lost in my mind right now, and have to figure out how to deal with this. Problem is that there always one side or another with me, I can’t be in between. So here I am, asking questions and reading forum for more stories to see how it could turn out :slight_smile:

Hi

I understand your dilemma. Get tested and you may find you get a diagnosis of MS, or you could just end up no further forward with your wondering and worrying.

The point of being tested is that, if it is MS, then you could be prescribed disease modifying drugs (DMDs). The point of these is to prevent relapses. And so to prevent more damage.

Your having tested positive for Oligoclonal bands in your CSF but not blood may have an impact on being diagnosed with MS. Something like 80 to 95% of people with MS have Oligoclonal bands in their CSF. This doesn’t mean you have MS, but it’s another bit of diagnostic evidence that a neurologist would use, along with your MRI scans and VEP tests.

Also, times have moved on since your first tests, neurologists today are often more keen on encouraging people with results that maybe show a one time occurrence (or clinically isolated syndrome - CIS) to take a first line DMD. The aim of this is to stop MS from developing.

Obviously, it’s your choice whether to reopen the box and get another referral to a neurologist. Certainly if you had another bigger episode you should. But in the absence of big problems, I can quite see why you don’t want to go down that road again.

Best of luck.

Sue

Thank you for such detailed answer! I kind of understand that it is better the do the testing. I think I might give a little more attention to my ‘symptoms’, and do the general health check up, talk to my GP and see what she thinks I should do next. I really need to do a diary or something of that kind, because my memory is so bad that I couldn’t even remember what was the symptoms that led me to neurologist for the second time. I read my history of illness from that time, and see that some things haven’t changed. Or it’s back again, I wouldn’t know. I know from experience that neurologist going to want to know everything what happened or how I felt in this period of time, and I can tell only how I feel at that certain day or week. However, I read that it’s not uncommon not to have any attacks in some time (when you have MS), and still there may be changes in MRI (so another reason to get tested). And also it slipped my eyes that it is high risk of having or developing MS after episode of ON, but with years (and clear MRI’s) that risk gets smaller!! So that’s the good news. Thank you for explaining about that spinal tap results, it’s easier to understand now why I am where I am, if they were certainly negative, maybe I’d be of the suspects list by now :slight_smile: as that result doesn’t mean anything without MRI changes, I’m not too worried, but I do understand doctors position better now!

Keeping a diary from now on is a good plan. You can get an app diary (if you use a tablet or smart phone). This makes it easier to keep track of symptoms. I’ve been keeping one for about 6 years and it’s invaluable. You don’t need to write it everyday, just when something happens or when you think of it, even just do a weekly entry.

Don’t worry too much about the LP results. Some people have O bands in their CSF but don’t have MS.

And regardless of potentially being at risk of MS, don’t let it worry you too much. If you feel well and don’t want to start checking into things now, then don’t. Just try to put it out of your mind.

Equally, if you do get it checked out, don’t get too stressed by the process, try telling yourself that you are still you, regardless of the result. And if it’s to be MS, it’s not the end of the world. And DMDs are available to prevent relapses.

All the best.

Sue

If you were sailing through life, never giving a moment’s thought to your health (and why should a healthy 29-year-old waste sweet life on such matters?) then there would be a case for keeping it that way.

But that is not really what is happening, is it? You are not being a carefree person who doesn’t see the point of worrying about MS; instead you are a worried person who is troubled by an unknown that is (by the sound of it) starting to haunt your nights and darken your days. Time to consult the neurologist again, I think.

I do not know what exactly the neurologist might want to do next to confirm or otherwise what disease process, if any, is at work. But it does seem likely that the worst that will happen is that further tests show that you’ve got MS. Once you knew that, you would be able to start dealing with it.Importantly, you could also consider how to manage the disease and limit its impact on your health.

For sure, it would be rotten news if you had MS. Believe me, I know that very well. But sometimes the only thing that is worse than knowing is not knowing, and it does sound as though the fear of not knowing is becoming very difficult for you.

Alison

Just downloaded an app today (Thank you Sue for suggestion!). And during today I noticed that there somehow not that small amount of small things to write down (light headache, pain in ribs, some dizziness, tiredness) - everything very episodic except lack of sleep. So I think I might be doing entry to my diary once a week after all, to write down only those things that truly stood out, if any. Otherwise it may become my new lifestyle. I had leg injury(something with draw knee ligaments) during workout session 4 months ago, and it’s not getting better, as influmations repeats one after another. So I’m a frequent visitor in medical center now… I will use it as opportunity to visit my gp and get an appointment with Neuro. That will be easy part, as I had to do third MRI 6months after second. And I’ll try not to stress about it, both of you are saying truth, I lived with this thought for 6-7 years now (like everytime I heat up when working out and my vision gets blurry, I am forsed to think about ms), the worst that can happen I will be diagnosed with MS. Nothing going to change overnight, I will live my life as I lived this past several years except I will have opportunity to get medication, and get yet other reason to look after myself better. That’s good. Thank you so much for your advices. It’s simpler looking at things from perspective. And maybe this time I will have definite answer, yes or no. Or maybe it will turnout that only very small chance left to develop MS, since 7 years passed with no relapse :slight_smile:

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hi bijag

i just read my previous reply and it was very brief - sorry.

at least you had detailed responses from the others.

good luck with the tests.

i’d like to suggest mindfulness meditation to help keep stress at bay.

stress is bad for the symptoms.

carole x

You yourself is the best judge of anything is going on. If you feel different in any way then that is not right. If you are dropping things and banging into doors and door frame, then this surely needs answers. My Ms loves doors, everyday without fail. Keep pushing for an answer. Don’t let them fob you off. One serious attack can change your life forever. If you have family who can complain for you also that has more weight behind it. My GP told me that.

Hi Carole, Your answer was straight forward and clear, there’s nothing to be sorry for :slight_smile: I would describe myself as overall not stressful person :slight_smile: Just need to keep my mind in other areas of life during testing and I think I will be ok (or I’ll try little bit of yoga :))). After this discussion and last few days of reading about MS and stories here I feel much more confident that everything will be ok either way.

I feel that I am indeed clumsy sometimes, but I would consider myself at normal state of clumsiness. Well the doors situation is weird, and I fall downstairs (don’t be scared - lightly on my bum, without any bad consequences) maybe more than average person, but I can be absent-minded and in hurry sometimes, so it could be that. My husband in fact is the one who points out my clumsiness. One weird think too is that for example I sometimes miss cup with spoon of sugar miserably and all the sugar goes all over the table, and other similar situations happens. But there is very light boundary there, with normal and not normal. I don’t know if I could tell those things to doctors, because they will think I’m just being funny. Being clumsy is not a crime :slight_smile: As I said before, I probably would’nt give it another thought if not that “you may have MS someday” sentence in the past. I see that as a serious problem with MS, so many people are dropped in that “limbo”, and they wonder for years, sometimes with mild issues like mine sometime with serious health issues… I should research that clumsiness in MS more maybe, to know what causes it. Because I wouldn’t say in my situation that it is related with dizziness or something wrong, I just fail out of thin air. P.S. So sorry for your situation with doors too :frowning:

Don’t apologise, just get the tests & enjoy life.

If you do not have ms your journey will continue, if you have me your journey will continue . You need answers,

big hugs