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.
Hi Emma,are you in the UK? My advice would be to go private if possible as the NHS waiting lists are quite lengthy due to Covid.
Thanks for the reply. Yes I am in the UK. I have been reading through the forum and the experiences of others so I have now realised that this is going to be slow process.
How are you? good I hope.
Thanks again for replying. It’s nice to talk to others who understand jow I’m feeling right now.
The eye specialists cannot withold your records from you, so you can request them including a copy of the scan on disc (and then hand them on to your GP). There is a formal process due to data protection law, which will be on the hospital web site.
Have you talked to your GP since the follow up with the eye doctor? Do they know that you are in this current limbo position, or have they just said that they too will be waiting the follow up from the neurologist, and just to be patient, as they can’t really offer any real help until more is clear of what is going on?
Have you got a referral date for the neurologist yet?
You’ve come to a good forum here.
Thank you for the reply.
I have requested and the GP has requested several times that the MRI report be sent to the GP so that I am able to talk to them about wider issues rather than just the eye.
The eye clinic have refused, so I have just submitted a request for all of my records, MRI images and report so that I can give them to the GP myself.
The GP have pretty much said that they will have to wait for the neurologist to confirm a diagnosis of MS before they can do anything much.
No word from the neurologist but the GP/ Eye DR both seem to think it will be a case of months rather than weeks.
I spoke with GP this morning (no F2F apps) and he said just take the steroids for now so at least the eye is being treated but everything else will probably have to wait.
I’m so sorry I know I sound like a massive moaning minnie, but I feel really kind of shut out of my own care and treatment if that makes sense.
How are you? Well I Hope. X
As I see you are in the UK. I ended up in a&e due to vision loss (not complete) in right eye and they told me to go away and go to an eye hospital in the morning which I did. They did a CT scan and then an emergency MRI. I was then told there was some lesions on my brain and like you I think thought the worse and again at a rubbish time. I kept on at my GP who would call Neurology and in the end I’m pretty sure they got fed up with me and pulled my appointment forward. You are your own advocate for your health (a great women once told me) and you can get the help you need if you are consistent.
I hope you are well,
Always a message away.
Thank you for your reply. I hope you are doing well.
I think my GP is getting fed up with me keep ringing. I just can’t get my head around the segregated care approach. It feels so unfair to drop ’ lesions on the brain’’ ’ optic neuritis secondary to MS’ on people who have previously been fit and well with no symptoms then expect them to just go away and get on with it without having a wider conversation with them.
I have started my steroids which are making me feel rough and not sleeping. No improvement in the eye yet.
I find it comforting to read entries from others who understand what I’m feeling so thank you again for the reply. Xx
Just been reading through your thread. I absolutely agree that the eye clinic don’t have the right to withold the records from you or your GP, so I hope you get copies of them soon.
Dx of MS can be unfortunately, a slow process indeed. So patience is a requirement! However, if you make enough of a nuisance of yourself, i.e. keep badgering, hopefully they will get fed up and expedite things just to get some peace. Sometimes the squeakiest wheel gets the most attention!
In my case it was the eye clinic who referred me to Neurology, perhaps the thinking is a bit more joined up where I am… ironically, things slowed down after I’d been referred to Neuro.
It is difficult to get anything moving forward without a confirmed dx, so you need to push for that. Even if you don’t have a dx, there is nothing to stop you from contacting the helpline and asking questions, or just for someone to talk to about this who will understand.
I hope you get some answers soon.
Thank you for your reply and kind words.
Many people have said a squeaky wheel approach might be the best way forward.
I’m still waiting for the images and report (requested through patient access) so hopefully when they arrive I will be able to discuss with my GP or do some research of my own.
My GP when I last spoke to them said that a lumbar puncture would probably be next to do but that has to come from the neurologist and with covid it’s unlikely that there’s any space to get me admitted to hospital for it anytime soon.
I do wonder though if my Gp could be ordering other blood tests or investigations in the meantime? I don’t know, I feel lost and in limbo - thank you for replying .
Hope you are well.