To know or not to know?

New diagnosis and before diagnosis
1

Hi everyone.

I’ve just turned 31 and have had a diagnosis of Optic Neuritis confirmed in my left eye. I’ve been VERY lucky because I’ve been taken on by the Moorfield as there are some oddities that have interested them for research work.

Anyhow, the prospect of MS has obviously come up from my own research and from the doctors. Moorfield have a policy of either providing an MRI to look for brain lesions in addition to the eye, or not to scan - it’s a matter for patient choice.

My understanding is that, there’s a strong possibility that this could be a presentation of MS for me - or, I could be one of the lucky ones who has Optic Neuritis for no particular reason. I have had no other symptoms or attacks / relapses to the best of my knowedge - but I could be wrong about that. I’ve had tremor since I was 10 for example.

I think I’ve come to a decision about if I want to find out if it’s MS or not or wait to see if something else happens to me. I know it’s a decision personal to my wife and I, but I did decide that I was going to get lots of opinions - not just of family but of people who have been through it too, like you.

So… do I take the MRI scan and find out if I’m going to be 80% likley to get MS, or do I not and try to put it out of my mind and hope that I never have to think about MS again?

Ultimately, I think it comes down to IF i can forget and carry on. If I think I can - I should not take the scan, if I think I can’t and it will affect my life, then I should take it and accept that I’ll either walk away smiling or find lesions.

Obviousy - I’m terrified, annoyed, angry, upset - all of the things you’d expect at a time like this. Interested to hear your thoughts on “to know or not to know” if you have the option and any ther words of wisom that might help me come to the best decision for me.

Thanks

M

2

It is a personal decision, so you may well come out on the other side of this decision once you’ve heard more opinions and weighed everything up, but I’d always go with the option to know. After one episode you wouldn’t get a definite MS diagnosis (you’d get either CIS or probable MS from what I understand if they were to find lesions), so I understand why you might want to know yet. On the other hand, if you are unlucky and have a second episode then having an MRI now might help speed up the diagnosis procedure, and thus enable you to get treatment more quickly. Once diagnosed you have access to more support, including drugs, and you have more rights at work etc., because you’re automatically covered by the discrimination/equality act. There are lots of good reasons why a diagnosis would be a good thing (or in your case, getting further along the route to diagnosis).

However, there is a good chance that this is just a one-off thing for you. Would you worry more if you get a CIS/probable MS diagnosis than if you don’t get tested and never know? That’s something only you can decide really, but should be an important consideration. There’s also the possibility that scans don’t reveal any lesions - if that would be a big relief then it’s worth taking that into consideration too. I don’t think you can really know how you’d react if they do find something, but you probably can know how you’d react not knowing (you don’t know now after all!) I’m sure you’ve considered all this already, but I didn’t want to post wholeheartedly ‘you should get scanned’, because I know it’s more complicated than that.

I hope whatever you decide ends up being the right decision for you.

3

Hi, now your post could have been from me recently!

For 14 years I have been tested for MS, and similar conditions. I actually thought it would turn out to be PPMS.

I was in a wheelchair within the 2nd year of mobility problems. But none of my 4 MRIS, 2 LPs, 2 EMGs, VEP and many blood tests proved MS.

I finally accepted it cant be MS just last Friday.

So now my label is ISP…idiopathic spastic paraparesis.

Its an indefintie title, as all it means is no mobility, spasticity and spasms in legs, cause unknown.

Neuro said if I did have PPMS, there would be evidence on tests and more symptoms.

Then I had to decide if I wanted genetic testing. After much deliberation, I decided against it and have passed that particular baton to my chidlren, should they ever show similar problems.

This do I want to know or not question is massive to get your head round.

In my opinion…and it is only my opinion mind, if I were in your place, then yes, I`d have the test.

I just hope you are not searching as long for as I have.

regards to you and your`s.

luv Pollx

4

Hello and welcome to the site

Some people might be surprised by me saying this, but if I were you, I wouldn’t want to know. If you’ve never had symptoms before, the most you would be diagnosed with is probable MS (and that only if you had at least 2 lesions in your brain and those in the “right” places) and then it would be a waiting game to see if you ever had another attack.

I’d happily have blood tests done to check for other causes of ON that it’s better to know about asap (e.g. vitamin B12 deficiency, some genetic conditions) and I do think it would be useful to have the MRI done as it provides a baseline to measure any future changes, but I wouldn’t want to know the results unless there was something that could be done.

Ultimately though, it depends on how well you think you can put this behind you once your ON clears up. If you won’t be able to live happily without knowing, then you need to find out. If you’re the kind of person who can let go of worries that there’s nothing you can do about, then not knowing might be a good solution.

Not an easy decision!

Good luck.

Karen x

5

I had ON that was classed as CIS and told to go away but to come back if anything else happened.

For the next two yrs I went about everyday life as usual,I found excuses for loss of balance,cog fog etc.

At the back of my mind it was always chipping away is it/isnt it. I made all sorts of changes at work to cover things up,which as manager I could do. In the end what was obviously a major relapse hit aswell as ON again and I had to start the ball rolling.

I am now on copaxone and have had no further relapses.That last big one however did leave some residual damage and I was retired out of work.

There is no knowing what will be and many people never have anything else happen. If I had followed things up sooner would I of been on copaxone to maybe prevent that last damaging relapse? I doubt it as it was that last relapse that made me meet the criteria.

Could you try carrying on without knowing to see if you can live like that and if you cant then having the scan?

Pip

6

Thank you so much to everyone who has given advice so far. Please keep it coming!

My thinking at the moment is to perhaps have the scan (so I have a medical trail should I need it) but to request not to see the results. However - I’m not sure I could take it.

Ultimately, I’ll do what my wife wants. I get the feeling that she would rather know the facts than wonder, and perhaps I’m leaning that way as well. On balance, perhaps it’s best to know if there are lesions, with a few to getting a faster diagnosis and better / faster treatment if the time comes, rather than sticking my head in the sand?

Still have a little time before I need to make a decision :slight_smile:

7

Go with your gut reaction is my usual line of thought.

There isn’t a right and wrong in this case. If ms is the final outcome it will follow a unique path and you will still have the limbo of not knowing each day how your body will be,at least knowing why is some relief.

At least by knowing you do get access to treatments if that becomes applicable.

The thoughts of your wife are an important consideration, because she will be living with it aswell.

Best of luck whatever you choose.

Pip

8

Each to their own I suppose.

9

Along time ago I experienced neurological symptoms and because of this I was referred to a neurologist by a specialist consultant who also thought ms. Not ms per se but what I had experienced was a CIS. I was given another diagnosis of migraine. Eventually the symptoms returned and I found out I had been diagnosed with CIS, not migraine, and the information was withheld because I was anxious and the neurologist thought this would make me more anxious. What a )*&%$!

Even I have to admit the surpising advantage in hindsight is I lived many years free of worry.

The unfurtunate disadvantage is I just got on with it and didnt really dwell on neurological symptoms which were slowly adding up to big problems. Now I am a full fledged limbolander and I want to know.But I can say hand on heart that I am grateful for the years I didn’t know and didn’t have the worry of, did i convert to ms?

10

This is a really difficult decision to make and only you can make it.

This is my experience…

I had ON 13 years ago after the birth of my first child. It was picked up by my optician as i have another eye condition. He referred me back to my GP.

My GP did nothing. He told me it was an infection and as he could see it was improving and so was my vision then there was nothing i could do but wait for it to improve. I was so busy with a new baby i just carried on and after about 5 weeks my vision was fine. I put it to the back of my mind. No idea this could be linked to anything like MS.

I carried on as normal for 5 years and was oblivious to the fact that i had MS. I then had a second child and shortly after the birth i was feeling extremely unwell and i collapsed. I got ON again. Bit of a long story but i then was sent for tests and diagnosed with MS.

I was initially really mad at my GP - I did not feel it was his decision to withold the facts of what i had was ON and this might lead to MS. I now have mixed feelings because if i had found out sooner i may have been too scared to have my second child and would have missed out on the joy he has bought me.

You are pretty unlikely to get an MS diagnosis until you have had another ‘episode’ so by getting tested now you don’t have a lot to gain from it i’m afraid as they will not be able to offer you the DMD’s yet.

As i had only had one episode my GP was aware of it and as soon as i had serious problems i got diagnosed pretty quickly. Ignorance on my behalf was bliss as i would have been looking for it in those 5 years.

Would you be able to cope with ‘wait and see what happens’ or would that drive you crazy?

This is a really difficult decision to make and i would like to wish you good luck in whatever you decide.

I just wanted to share my experience in case it could help this decision in any way.

Best wishes to you and your wife.

Teresa.x

11

I posted a similar question on here in July. I first had symptoms 18 years ago with a few other symptoms over the years. The only one which has remained long term is slightly iritating pins and needles in my left hand. But this year I noticed L’Hernitte’s sign and an urgency to go to the toilet. So, after posting on here and after a lot of soul searching I went back to my GP, saw a Neurologist, had an MRI, and was diagnosted in early September. So, what difference has it made? Nothing, other than I know I have MS. Despite the doctors telling me for years it could be or it could be that, I always knew, it couldn’t really have been anything else. Do I regret it? In a way I do, because I had to return home and tell my wife I had MS. She knew about the episodes 18 years ago and the few things I have had since but putting a label on it seemed to make things worse. I suppose for me the time had come to get it checked out, toilet urgency, links to prostate cancer etc… But finding out I have MS has made no difference, and I haven’t told anyone.

12

Hi, I also like you had optic neuritis in March 2011 aged 37, my GP was great and referred me straight to eye hospital who diagnosed ON. Was told no further action needed and not to google as worst case scenario always at the top of the list. My sight came back after 8 weeks. Later that year lost feeling in foot, told myself had run too far. Then in December lost all feeling in whole leg, again blamed the gym trying the mind over matter technique!! March this year had massive relapse which resulted in loss of use of whole of left side, frightening and scary. Took me 5 months to recover and have been left with residual damage although to look at me you wouldn’t know apart from a slight limp. I have now been diagnosed with MS although had a clear brain scan. I failed my VEP due to ON, and had numerous lesions on my spine. I am now awaiting my delivery of Rebif in the hope it will stop further relapses, also have the support of great MS nurse and GP. I suppose what I am thinking is if I had gone sooner would I have avoided my last relapse which was distressing to me and my family. I have now reduced my work to part time and have just started back at the gym for 10 mins at a time. No more half marathons at the moment!! I wish you and you wife the best in what ever descision you come to.

13

Personally if you haven’t had any other neurological issues I’d be inclined not to go for the scan. Why worry yourself about something that you MIGHT have when you can enjoy life now. No amount of worrying will fix it even if they say it could be MS and certainly as Karen said there is a specific criteria for diagnosis someds are unlikely unless you have another neurological episode.

It has to be weighed up - if you get labelled as possible MS that’s in your medical notes and it can affect things like driving, mortgage etc. On the other hand if there is a problem it’s easier if you’re in the system to get help and support and the right meds.

I’ve had two epsiodes of neuro symptoms as they called it so I do fit into the diagnostic criteria for MS (though my 2 MRI’s didn’t show anything specific to MS). I’ve been offered a lumber puncture and EVP which are other tests which may support a diagnosis of possible MS. I decided to hold back on these tests unless I had new symptoms as even with those being positive I wouldn’t gt meds to delay the progression just the diagnosis. At the moment I feel well and my previous symptoms have gone so I guess I don’t need other meds or support at present but I have the safety net of changing my mind.

It really is a personal decision. Is the not knowing going to gnaw away at you or is having the label of possible MS/ CIS worse when you don’t get any disease modifying meds?

Whatever you do remember there are other cuases for optic neuritis so definitely go for the blood tests etc in cas eit’s something like vit B

Good luck making your decision.

Reemz

X

14

Having read some comments from other people, I feel my ‘ideal’ position would be to get the MRI but not get the results (as Karen suggested). I didn’t even consider that as a possibility, but seems like a good path to take if you decide you’d rather not know yourself. Again, it is a personal choice - I for one would go equally as insane not knowing as if I was given the information that it would be a possibility, but if you can put it out of your mind, by all means go for it.

I’m not sure if this is possible, but could you get the scans done and decide not to get the results, but then get them at a later date if you find that you aren’t able to put it out of your mind and would rather know?

15

Hey all

I just thought I’d check back in to let everyone know what’s going on and what I decided.

I had my second appointment over at Moorfields in London (they are B.R.I.L.L.I.A.N.T!!). It was a little surreal, after seeing the registrar no fewer than 2 additional consultants came over to look at my left eye. They all agreed that I had an RAPD problem with my eye. Other than that, the pain has gone, I’ve developed flashing on movement instead and the vision is pretty much the same. Light and colour are the most annoying things. Doctors were happy that it’s unlikely to get worse and should get better with a little more time.

All in all, my attitude is that I’ve been really lucky with this because some people with Optic Neuritis lose their sight completely from what I’ve read and heard and I still have 6/5 vision so I certainly can’t complain.

Regarding the scans… I decided to have them.

The reason is mainly because if I do wind up having MS, then starting off in denial probably isn’t the best place to be. I’ve got MRI and Electric tests booked for 4 weeks time, then a consultation in 6 weeks. I won’t lie - I’m bricking it about the results. There won’t be any of this “relief” business, but I think I’m slightly different as I haven’t had a “serious” attack. I imagine if you’re arms and legs go, then you’re really worried by what is causing it and a dx is a relief?

My dear old mum always says “prepare for the worst, hope for the best” and that’s what I’m doing. I’m pretty sure I’ll wind up having a ton of lesions. All of my ill health throughout my life has been neuro based. I’ve had benign essential tremour since I was 10, I’ve got a frozen shoulder from my teens, I had unexplained tinnitus aged 26 and now optic neuritis. I’ll be delighted to be a 20% er, but I think it’s more likley I’ll be an 80% er.

I’ll come back in when I’ve had the results and let you all know how I’ve gotten on. If the results are lesions, then I’m determined not to let the possibility of full blown MS make me down trodden. I’ve always been a complete work aholic, and my attitude is that I’ll continue to do everything I do until / unless my body won’t actually move. I will feel incredibly guilty if it’s bad news though. I’ve only been married 3 months. I’ve stiched her up (!! LOL !!).

Would love to hear from anybody else in similar boat. Doctor mentioned CIS - which is an isolated incident as far as I know?

What can I expect from my consultation after the scans. What are the possibilities. I’m guessing it’s either

  • 1 lesion in eye, nothing else - 20% likely to develop MS
  • A few lesions in the brain - 80% likley to develop MS
  • Tons of lesions in the brain - ???

Take care

Martin x

16

Good decision I think.

As far as what happens goes, it’s not so much about the number of lesions as about where they are.

The McDonald diagnostic criteria for relapsing remitting MS in a nutshell:

Dissemination in time: at least two attacks
Dissemination in space: at least 1 lesion in at least 2 places typical of MS.

Partially meet both criteria: CIS.
Fully meet one criterion: probable MS.
Fully meet both criteria: MS.

Whatever happens, please remember that this is just a label - nothing is going to change because of it; your body will carry on as normal, and that’s not been so bad really if it started when you were 10 :slight_smile:

Karen x

17

Well I had my MRI scan today - so now a wait for results on 4th Feb. Won’t lie - am anxious about results as no idea why it might throw up. Only curious thing about MRI today was that I was told I was going to have a contrast dye about half way through the scan and the radiologist explained all about it, and then they finished the scan and said that was it and that I didn’t need contrast. What could that mean? :s