@Nicb 

Last reply

Nicb

Optic neuritis

Hi, I'm new to this site and have not been diagnosed with MS yet. I have suspected for 7 years now that I have it. I am 50 years old and live in the North West of England with my husband and 14 year old son and 11 year old daughter. 7 year ago I was very ill and bilateral optic neuritus was diagnosed. I was in hospital for 3 weeks and it took a very long time to feel a lot better (over a year). I lost my sight in both eyes for several weeks and had bleeding around my optic nerve in both eyes. The colour blue went from my eyes I was told and then very gradually my sight returned ( firstly black and white shadows then I could make out what things were and then very slowly the colour returned). I had been suffering for what I thought was a huge migraine with lots of flashing at the side of my eyes which gradually deteriorated over one month before I was taken seriously. I went to my GP four times and to a and e twice before being sent to see the eye Dr who diagnosed ON. I was given 5 days of intravenous steroids and was on oral steroids for 9 very long months (had lots of problems from the steroids as well which I've heard is very common). As you can imagine it was a very scary time and was especially hard as I had a 7 year old and 4 year old who I couldn't look after as I was so ill. In hospital I had 2 brain MRI scans and a lumbar puncture and so very many blood tests as all the Drs were completely baffled. They said it was quite rare to get bilateral ON and it nearly is always caused by a neurological condition. MS was mentioned a lot. Apart from my eyes I had so much pain and pressure in my head and my ears were so sensitive to noise and developed tinnitus which is ongoing. I also was very weak and struggled to walk. Fast forward 7 years and I have been functioning fairly normal despite feeling exhausted a lot of the time and having lots of off days and working full-time. I feel rough a lot but just continue my day to day job and feeling shattered and not up to much when I get home. I have had 6 further cases of ON which has been the right eye and have had a lot of head and eye pain and the flashing and affected vision has lasted about an hour each time then leaves me feeling weak and rough for a few days. 3 weeks ago I had been feeling very exhausted and had a permanent headache and I am very sensitive to the light. At work I was trying to not have many lights on as it as causing pain. But I had a 7th attack of ON at work which was worse than the previous attacks (apart from the first one!). I came home and the flashing and eye blurred vision in my right eye went after a couple of hours. I phoned the GP who has requested a brain MRI scan and is trying to fast track my neurologist app - I normally go every year to see neurologist but because of covid (I haven't had it yet) I didn't go last year. This was 3 weeks ago and I have now had the MRI scan and awaiting results. I am off sick from work as my eye pain and ears and head pressure is awful and I cannot tolerate the light on. I am trying to have a little walk each day as the fresh air on my eyes feels lovely. I try my hardest to not feel sorry for myself and I am not good as sitting around resting. I have been doing yoga and step exercises to keep my body moving. I am an active person and myself and my family go on a lot of family walks. Other symptoms over the last 7 years are constant tingly legs, on and off bad cramp in legs, hip and mainly my feet, involuntary cheek biting with my teeth, involuntary finger and hand movements, needing the toilet urgently and clicking and soreness in my ears. I see an optician every year and I wear glasses and my eye sight does worsen each year slightly but this could just be my age. I have trouble judging distances sometimes and eyes go blurry if there is fast movement e.g. Cars travelling fast or my child jumping up and down. Also it's tricky if there are uneven steps to go down or up as hard to judge. My eyes get tired a lot. I am getting really fed up now and almost want a diagnosis so I go from there and know what I am up against. Sorry for the very long post but wanted to know if anyone has had something similar to this. Thank you.
@Stumbler

Good grief, @Nicb , you sure have been through the wars! Could it be MS? Well, er, yes and no. MS symptoms also present in various other conditions too. This is why MS is so notoriously difficult to diagnose! I completely understand why you have joined us here. MS is one of the answers that your quest for a diagnosis has located. With information at our fingertips, we all try and self-diagnose, where the medical profession have seemingly failed. If only life was that simple. If only our bodies were not such complicated organisms, especially the brain. Our Doctors and Consultants are very well-educated and knowledgeable in their medical fields. But, they are not magicians. They only have their test and scan results to interpret and these can be lacking in detail. It is said that we only ever use 10% of our brain power, but no-one knows what the other 90% does! I'm starting to babble on now. But, start a symptom diary, to record specifics that you can pass over at appointments. There's some details about symptom diaries here :- https://mstrust.org.uk/a-z/diary-symptoms There's some links on that website to mobile phone apps, which can be used for this purpose. I wish you well in your quest for answers. You're quite welcome to remain on the Forum here and we'd love to hear any updates. Good luck.

@Nicb

Thank you for your advice. I will start a symptom diary. 😀

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