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Hello, my daughter has been diagnosed with optic neuritis and her brain mri was negative for Ms lesions but it was also done without contrast. Should we request a repeat and ask to have a spine mri as well. I am thinking of bringing her to mayo for a consult but would like to have as much testing done here prior as the cost would be prohibitive for us otherwise. We live in Canada so the testing is free but the wait for a neuro consult is very long as we would like answers as soon as possible. Any insight would be very appreciated.
Replies to "Hello, my daughter has been diagnosed with optic neuritis and her brain mri was negative for..."
Thank you very much for the information! I will definitely search for your posts
Yes, I agree. I've had ON twice and don't have MS, but we know it is autoimmune in nature, although we are not sure what exactly it is. Mayo Clinic is the best, if you can get there.
A key treatment is three days of high dose IV steriod. This shortens potentially the amount of time with ON but is not a cure, as there is no cure...
I've had this high dose IV steriod done both times. Despite this, I still have some damage to one eye from a severe episode.
The sooner you get help from a neurologist and nuero-opthomologist, the better. This is a serious disease.
Also Mayo Clinic does have financial aid available, although I am not sure about being from Canada.
I went to an emergency room my first time and this was a bad plan, as they are not trained to look into the back of the eye, so they had no clue what to do and it wasn't at Mayo Clinic...
Mayo Clinic and other places can also do the MOG testing and a lot of tests as well as a MRI.. Also the symptoms can be different a second time. I knew the second time because I couldn't see the colored numbers and letters on the eye chart and the rim of the flashlight was missing when I checked.
This is a scary thing to have. Good luck you are not alone!!!
Hello @wolffpac and welcome to Mayo Clinic Connect. I wanted to connect you to an existing discussion on optic neuritis in the Eye Conditions Support Group, so you will notice I've moved your post here:
- Optic Neuritis: https://connect.mayoclinic.org/discussion/optic-nueritis/
I see that members @gardrums123 and @rarelybees2889 have joined and replied to you, which is great.
Here is a link to conditions treated in the Neurology Departments at all three locations to help you decide what location would be most fitting:
- Mayo Clinic Neurology: https://www.mayoclinic.org/departments-centers/neurology/home/orc-20117057
How old is your daughter (i.e. a minor or an adult)?
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Absolutely have the MRI done with contrast, as well as the spine as soon as possible. If it’s possible have them sent to the Mayo Clinic. I don’t know if you have read any of my posts , but my husband started the same way. Eye issues. He was seeing double vision and was having a balance problem which we thought was due to his eyesight. It turned out to be much more. They ran blood work and spinal fluid and sent it all to the Mayo, they were the ones to diagnose him with a very rare and newly discovered autoimmune disease called GFAP.
They bounced back and forth between MS and Lymphoma for awhile.
We lost so much time until all of his fluids were sent to the Mayo.
He was 73 when he was diagnosed and still has vision problems and balance issues. It’s been a year of high dose prednisone.
There are more posts of mine on this connect sight if you can find them.
Good luck .