Hi,
I lost some vision in my left eye around September/October 2019, long story short I was diagnosed with CIS just before lockdown. Neurologist put me in for a spinal MRI (I had already had a brain and orbital MRI - showed inflamed optic nerve in left eye) and a lumbar puncture. Due to lockdown all of these have been postponed until lockdown eases.
However, my right eye is now doing something similar to my left eye - so pretty certain I now have an inflamed right optic nerve… Should I get in contact with the CIS/MS nurse (I have an email address) or wait for my tests to eventually go ahead and mention it to the neurologist when I see him next (I have an appointment for 4th September). With my left eye, nothing was done, we just waited until it cleared up on its own (it took ages, but it did eventually get back to almost completely normal).
Any advice would be greatly appreciated - I just feel kinda stuck and lost at the moment.
Thanks!
Hello BettieVR, welcome to the forum.
I’m sorry to read you’re having such a time with your eyes.
Now, were I in your position, I would be on the 'phone to my MS nurse straight away (or email if no number). It’s your sight and it’s precious - so don’t take any chances. I don’t mean to alarm you, it may not be much at all, and I hope it isn’t, but it is important.
Please talk to a medic
Wishing you well
Ben
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I would speak with ms nurse. I suffered from optic neuritus in 2015. I was finally diagnosed with ms last year. It was a long time to diagnosis. If you have a positive lumbur puncture they should diagnose you but some consultants seem reluctant after one episode.
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Hello Bettie
I agree with the other respondents. See if you can get a view from your MS nurse, or even contact your neurologists secretary and ask if an email could be redirected to the neurologist.
Supposing you do have optic neuritis, as far as I know, it responds well to high dose steroids. It’s possible that you could get a prescription for steroids if your MS nurse/neurologist agrees. S/he could contact your GP surgery and arrange for a course, once your urine has been tested for potential UTI.
UTI testing is vital before taking steroids, because a sneaky bit of bacteria can get miles worse on steroids. The point of steroids is to lower your immune response, so you should ensure you always get tested before starting steroids. (GPs, for some reason don’t always suggest checking for UTI, which is why we should insist on it!)
High dose steroids, if you’ve not had them before, are pretty unpleasant to take. Their side effects can be nasty, from a horrible metallic taste in your mouth, stomach upsets (get a prescription for something like Omeprazole to protect your stomach), sleeplessness and a nasty irritable temper! But, they do work. Or at least, sometimes they work brilliantly. Other times less well, they’re a bit hit and miss. The sooner you start on them the better if you have a relapse.
Best of luck.
Sue
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Hi all! Thank you for your messages. I emailed my MS nurse (I don’t have a phone number) and she forwarded my email onto the doctor. Not heard back yet, but it feels like I did the right thing. This is all very new to me and I worry that I’m making a fuss over nothing. Which I know is silly because sight loss is really quite scary! Thank you again all! Bettie
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