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Waiting on appointment

I had an episode of suspected optic neurotic and sent for an MRI. Just had letter back that says radiological evidence of probable ms with optic nerve involvement. What does this actually mean ? Just now waiting on neurologist appointment. Trying not to let it get to me but keep thinking about it. Thanks in advance.

Hello Trix

How stupid of the hospital to send you a frightening and unhelpful letter like that. Generally speaking, diagnosis of MS is done by a neurologist, and tends to be face to face rather than in a letter from the radiology department.

Optic Neuritis is basically inflammation of the optic nerve. Have a look at https://www.mstrust.org.uk/a-z/optic-neuritis

The letter you’ve had (imo) does not mean unequivocally that you have MS. But it does mean either that you ‘might’ have MS, or that you might have had a one off occurrence of what looks like MS but may not lead to MS or reoccur. This is what is now called a Clinically Isolated Syndrome (CIS). Have a look at https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis

When you have your appointment with the neurologist, try to give the doctor a sense of what symptoms you’ve experienced which could be connected. It’s helpful to write down a sort of timeline of what has happened to lead you to this point. Include any symptoms that have completely cleared up and anything that’s lingered.

It’s also a good idea to take someone with you to the neurology appointment. It’s easy to sit in the office, following everything that’s said, only to walk out and immediately say ‘what did X mean?’ or ‘what happens next?’

Try not to worry (I know, easily said, harder to do), if you’ve not received an appointment letter within a couple of weeks, try phoning your hospitals appointments team to make sure they have the referral in the pipeline.

And feel free to come back on here to ask questions, or just for moral support.

Sue

Hello, my daughter has all the symptoms of MS including Optic neuritis, short term memory loss and being wobbly and occasionally falling, but had been told she doesn’t have MS, she has had 2 lumber punctures and MRI and lots of blood tests. She has now been told it could be Neuromyelitis Optica, and is waiting for more tests. Does anyone know anything about this illnes, and the further tests involved. Because my daughter was on a computer 8 hours a day she has had to give up work. She is 33 any information or advise would be most appreciated Thank you

Hello

You’re right, Neuromyelitis Optica does share quite a lot with MS. I found this Neuromyelitis optica - NHS The webpage also has a link to NMO-UK.

Sorry I can’t be of any more help.

Sue

Thank you. I was quite suprised with the wording of the letter. I have had pins & needles on and off for a long time and a couple of occasions where one leg has gone completely numb up to my knee which woke me up. I’ve also had times of exhaustion which I went to the doctors about. I had op for carpel tunnel on one hand last year and mild symptoms in other hand. Get regular headaches also. Always seem to put symptomsHopefully down to other things. Hopefully won’t have to wait too long for appointment. Cheers.