Lisa Lucier, Moderator | @lisalucier | Sep 27, 2019
Hi, @rarelybees2889 - just wanted to check in and see how you are doing? Also wondering, like @ethanmcconkey, if you have been diagnosed with autoimmune-related optic neuritis?
Hi
Sorry its taken awhile for my response...After seeing a neurologist (autoimmune specialist) and rheme at Mayo, they do think it is for sure autoimmune related. Optic neuritis twice and my other autoimmune issue is Sjogren's Syndrome. Obviously the optic neuritis not caused by SS, but caused by "autoimmunity" according to my records.
Lots of tests and still no full answers.
I have joined one research study in Autoimmune Nuero at Mayo, and will also join a second soon in optic neuritis.
I am getting my care at Mayo now, despite not living in Minn fulltime. Rare disease is no fun.
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.
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.
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 .
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.
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.
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!!!
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!!!
Thank you for your reply that is very helpful! I want her seen as soon as possible for sure. Is one campus better than another for
Ms and similar disorders?
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.
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/
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Hi @rarelybees2889 here is a research article on autoimmune optic neuritis (neuropathy) that may provide some helpful information: https://jamanetwork.com/journals/jamaophthalmology/fullarticle/263156
I'm tagging @poppymom @staffordpark @anniemaggie as they all have mentioned optic neuritis in the past and may be able to offer their support.
Back to you @rarelybees2889, have you been diagnosed with autoimmune related optic neuritis?
Hi, @rarelybees2889 - just wanted to check in and see how you are doing? Also wondering, like @ethanmcconkey, if you have been diagnosed with autoimmune-related optic neuritis?
Hi
Sorry its taken awhile for my response...After seeing a neurologist (autoimmune specialist) and rheme at Mayo, they do think it is for sure autoimmune related. Optic neuritis twice and my other autoimmune issue is Sjogren's Syndrome. Obviously the optic neuritis not caused by SS, but caused by "autoimmunity" according to my records.
Lots of tests and still no full answers.
I have joined one research study in Autoimmune Nuero at Mayo, and will also join a second soon in optic neuritis.
I am getting my care at Mayo now, despite not living in Minn fulltime. Rare disease is no fun.
Looking for research articles on this topic. Any suggestions?
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.
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 .
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3 ReactionsThank you very much for the information! I will definitely search for your posts
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1 ReactionYes, 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!!!
-
Like -
Helpful -
Hug
2 ReactionsThank you for your reply that is very helpful! I want her seen as soon as possible for sure. Is one campus better than another for
Ms and similar disorders?
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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