Forum

Should I go to my neurologist for confirmation, I'm living with hope that it is a one off...

Hi, I’m 36 and have always considered myself healthy, 2 weeks ago I lost most vision in my right eye. I was diagnosed with optical neuritis and put an iv steroid drip for 3 sessions with oral tablets afterwards. The MRI scan showed something to confirm optical neuritis and I have been given two options, try to put it to the back of my mind, get my eye sight back and keep my fingers crossed or see a neurologist. My wife and I had our first child 2 weeks ago and instead of being care free I feel there is an axe hanging over me. Whilst I don’t have a diagnosis yet I have hope which it feel I need for my sanity although I’m aware that if it is MS I could get treatments that will help prevent further episodes. I feel like my life has been turned upside down overnight, I guess like everyone else I feel scared, cross and resentful. All my grand parents lived well into their 90’s and I hoped this would be my future. What do you think I should do? Thanks Rob

I was diagnosed 22 years ago but hindsight can trace my first incidence back over 40 years. I have had a few awful times requiring hospitalization and there is a wheelchair somewhere in the back of a cupboard.

I can walk unaided, just not for the miles I used to, normally I use a walking stick or one crutch for stability and to hit the ankles of people who get too close. I still drive - an automatic.

My children are now adults.

While you have to make your own decisions I would suggest seeing the neurologist. If you do have MS the medications available now are fantastic.

Your life is yours to live. You are the same person today as you were before the optic neuritis.

Liz

Hi Rob, To be honest, I think it unlikely you would get a firm diagnosis of MS after a single episode of optic neuritis anyway. The “multiple” aspect of multiple sclerosis means a single attack cannot usually be accepted as a confirmed case, because although ON is a common early symptom, by no means everyone with ON goes on to be develop MS, and if you did, it might be years away. You could go to the neurologist and be told it is possible MS, probable MS, or even, as you’ve admitted, that it will be classed as a “one off”, for now, and you’ll be advised to go home and try to put it behind you, but to report in immediately, should anything else happen. I do not, however, think you will get an immediate diagnosis of MS. There could be some merits in getting on a neurologist’s radar now, so you do not have the pallaver of having to be referred from scratch, if anything else happens. Also, he or she might schedule you in for an MRI scan some months in the future, so they can monitor for any changes that have not produced symptoms. So I would not say it’s bad to go to a neurologist, I’m just not convinced you will receive an answer either way, at the moment. So it really depends on your approach to life, and whether you would prefer someone was monitoring, just in case. I have to add that MS is not usually a fatal disease, and most people with it have a normal or near-normal life expectancy. A great aunt of mine lived to 87 with it. I believe that is above expectation for a healthy male, even today, so you might not be quite that lucky. But even if you were diagnosed with MS, it is not incompatible with living to retirement age and beyond, though most people’s quality of life is compromised in some way. But to what extent varies hugely. Not everyone is visibly disabled, and not all will ever need a wheelchair, so having MS would not mean you were going to die or be completely incapacitated within a year or two. Such an aggressive course would be quite rare. I know I haven’t really answered your question, but I don’t think there’s a right or wrong answer to this. It depends on the type of person you are, and what YOU think you should do. I would have thought the views of your wife would probably have something to do with it too, but ultimately, it’s your choice. I will say that if it is MS, the truth will come out eventually, whatever you decide. With hindsight, both I and my doctor had dismissed things for years, that were probably early signs. Eventually, however, I got more dramatic and classic symptoms, that enabled a firm diagnosis to be reached. But like most people, I was NOT diagnosed after a first recorded incident, even though lesions were found. I was booked in to be re-scanned after six months, at which point further lesions were found, enabling a confirmed diagnosis. That was over 3.5 years ago, and I have not died, and you would still not be able to tell by looking at me. Hope this helps a little, Tina

Hi

Im 21 years old and ive just had my 2nd episode of optic neuritis.

After my first episode due to having a family history of ms i was refered to a neurologist and i also had an MRI Scan. i think it is a good idea to go to see your neurologist as i think he definately put my mind at ease and he also explained things in more detail and he is a good point of call for you in case you have concerns for futher symptoms or if you are just worried. Obviously the decision is entirely up to you. On my appointment to the neurologist he said due to having only one episode, it is not conclusive to give a diagnosis, as MS, is “Multiple” signs. therefore i highly doubt you will have a diagnosis(based on just one case of optic neuritis) and many people only have one sign of optic neuritis and thats it.

It is nice to talk to your neurologist and just discuss how you are feeling, after my visit, i arranged a follow up for 6 months time. unfortunately now due to haveing another case of optic neuritis im going to have to see him sooner then i hoped but thats just how life goes.

Wish you all the best

Morning, Thanks both for the time you took to write, I will talk it through in detail with my wife although it may be sensible to go and at least have a chat as I haven so many questions. The hardest thing is trying to be positive, at the moment it is hard not to think worst case scenario in terms of quality of life etc so I am determined to book things to look forward to every month and get on living and making the most of life. Hope you have a good bank holiday. Thanks again Rob