I hope you are all doing OK.
I am new to this forum, and very new to MS. At the start of December 2021, over the course of 3 days I lost complete vision in one eye. I was taken to A and E where a Doctor reassured me that it was nothing to worry about and he would refer me to an eye specialist for some steroid drops (Scleritis).
I saw the eye specialist a few days later who asked if there was any MS in the family and referred me for an emergency MRI scan. Two weeks after the MRI I went for a follow up with the eye DR who said the scan showed signs of MS and referred me to a neurologist. I am still waiting to speak to a neurologist, but the eye clinic remain convinced that I am having a relapse of MS.
I have been given a prescription for a very high dose of oral steroids but I feel uneasy about taking them without seeing a neurologist or my GP.
Although the vision has improved since early December, it has not returned completely. I remain a very scary limbo at present, the eye clinic are only interested in treating my eye and unwilling to discuss MS with me, other than to say that this is the cause of my vision loss.
My GP cannot talk to me about anything, because I do not have an official diagnosis of MS and the eye clinic will not share any records or copies of the MRI report with him.
As it is my eyesight that has been affected, I have been told not to drive. The cost of public transport and prescriptions (if/when I take them) is all mounting up, and I have looked into PIP payments or DLA for help but I think that I need a formal diagnosis before I qualify for any of this.
I also have lots of things going on career wise and this could not have come at a worse time. I feel stuck in limbo and turning to google (which is where I found this forum!) for advice and support because although the DRs want to treat my eye, I am a whole person!
I feel like I have had this life changing information dropped on my head and no-one seems interested if I am processing the information and coping well with it. And more importantly, no-one seems willing or able to talk to me about what MS will mean for me going forward.
Please could I ask if anyone can share their experiences with me so that I might be able to understand the next steps and how my future is going look?
Thank you so much for reading, best wishes.