I am writing on behalf of my partner as she currently is unable to see text.
On the 7th October she started experiencing light sensitivity - she thought this was a hangover as we had been to a wedding on the 5th and the wine flowed freely. By the 11th October - she started losing vision (words) in her left eye. She went to the urgent eye care at the hospital and was told her eyes were fine and to go and see how she goes. We were going on holiday and asked if it was safe and they said yes it was fine.
We went on holiday, her eyesight kept deteriorating and by the Wednesday her right eye was inflamed - we think from the eye exam as a stye had come on that eye. We booked a flight home as she was quite upset and booked in the Doctors thursday morning.
We were sent back to the urgent eye care and told not to leave without a neuro appointment. He had a look at her eyes and said they looked fine. He did an urgent referral to neuro and said we would have an appointment that day or the next. He said it could be a stroke or something else which he didn’t want to say. This terrified her and she was unable to sleep for four nights after this.
We didn’t hear anything. By the weekend her eye sight was getting worse and her right eye was starting to lose words - she could not read any text in an eye exam with her left. We went to A&E and asked for Neuro - Neuro refused to see us and said she would have to go back to the eye clinic and get an up to date test before they could see us.
On Monday 22nd October, we went to our GP for a fitnote due to her being unable to work. He did an eye exam and called the Neurology ward and demanded they saw us that day. We went up and had an MRI. The next day she had an LP and started three days worth of IV Steroids. By the weekend she was admitted to hospital with severe pressure in her head. They put this down to the LP. She was now unable to sleep without the aid of Zopiclone.
By the 1st November, she still had no improvement in vision - I called the hospital for some advice and they said we would have to go to A&E and wouldn’t speak to us over the phone. We went to A&E on Sunday 4th due to the eyes and the pressure in the head when she closed her eyes. It would build up. They told us to go home and try and get our appointment with the consultant expedited.
I called the secretary on the 5th November - she said she couldn’t expedite the appointment but she would call the on-call registrar and ask him to speak to us. He had us back in to see him on the 7th and did an eye exam. Both eyes were still the same and had not improved. The LP also showed 98% probable that it was MS. He gave two more days of steroids and sent us to the eye doctor. The eye doctor had a good look, the inflammation is where both optic nerves meet which is why it started affecting the right eye, although the left took the brunt of the inflammation - he said this might be why it is taking longer to heal.
So she has now had 5 days worth of steroids - it will be 5 weeks on Thursday since her eyesight started to deteriorate. Has anyone else had experience of the inflammation at the point where both nerves met - did it take longer to recover? She is really scared - she worked for ten years to become an accountant and her eye sight is the only thing that would make her have a day off work. She hadn’t had a sick day in 21 years since she started working at 16.
Is there anything I can do to help her? Help her eyes recover? Anything? I would do anything for her she is my absolute world. She was in my arms crying at 2:30am this morning as she still cannot fall asleep naturally and as she lays there this pressure starts building in her head behind her eyes. Is this a normal period of time to see no recovery at all? I’ve looked through so many forums and seen so many people saying their eyes healed within 2 weeks and then people who say they never had improvement - its terrifying. She told me if she had a pill that she could take and go to sleep for ever she would take it. I think the withdrawal from the steroids is still happening as she has been so low. She has been complaining of tingling in her legs and when she wakes up her hands are numb - this could be withdrawal though I think?
Sorry for the long message - I just don’t know what to do to help her. We have been referred to an MS Specialist, but no appointment yet and no MS nurse yet so no one to ask for help. I feel so helpless - this is all terrifying as you can all imagine. I can’t believe they tell you, you probably have MS and then just send you home, no number to call for help or advice, no counselling. Also - no one offered her counselling for her eyesight. Our lives have been turned upside down. We have had 5 years of hell, losing one parent after another, then my grandma and then my mum got cancer and now this… this has been since 2014 and we thought this year was going well. We thought finally a year without anything major in it - how wrong we were.
Thank you for any advice and thank you for listening.