I recently had issues with my vision in my right eye. It started out as blurriness but further progressed into soreness behind my eye and pain when I move my eye. After seeing an opthamologist, they diagnosed the problem as Optic Neuritis. They came to the conclusion that a prior case of Lyme Disease that I had the previous summer had not been properly treated and said that this was the cause of the ON. I was put on antibiotics for 2 months and my vision began to come back pretty quickly. I had 2 MRIs done at this time to look for lesions in the white matter but I was told that there was nothing in the MRI to be concerned about. The doctor stated something about a possible spot in the white matter but I was a little confused and scared to even ask him to explain further. They stated that they found a small adenoma on my pituitary gland but that it was nothing that I should be worried about. It has been 4 months since my last appointment. My vision has improved greatly however, its not back to the way it used to be. I'm concerned that perhaps my doctor may have looked over the importance or severity of my situation. Can anyone give advice on whether I should get a second opinion and if I should, what type of doctor would be best to see? My opthamologist spoke about the adenoma as if it was not a big deal and that a great deal of the population has them and they don't cause a lot of problems but I am still worried. I also worry about the possibility of MS considering the Optic Neuritis and the MRI.
I have some links in the health pages where you can read about pituitary lesions. You should get some basic testing.
Even though pituitary tumors are small and that is why, sadly doctors think they can be ignored, they can secrete hormones and that is where they can do a lot of damage. So you need to see a neuro-endo to get testing. You can also see a neuro-opthamalogist who knows lot more about pituitary tumors than a regular eye doctor.
A normal endo may or may not help you as most of them are pretty silly about pituitary lesions as well. Get copies of everythingl MRIs, reports, labs etc. Read and learn so you know if you have a good doc or a dud.
Was the MRI with contrast? That can show things that a regular MRI will not show.
When I had optic neuritis, I was told it could be caused by either
a) a tumor
c) a virus
or idiopathic (no identifiable cause)
We did an MRI, but it was without contrast because I was pregnant. It came back looking clear so I was told that most likely, I was fine and it was idiopathic. I had my baby a month later, and within a day, my vision returned to almost normal. A year and a half later, for the sake of thoroughness, I finally got the MRI with contrast done. It showed a brain tumor that had caused my optic neuritis.
I agree that you should see a neuro opthamologist. Mine is amazing. When we were concerned about the possibility of MS, my neuro opthamologist also had me see a neurologist. The neurologist did a series of simple neurological tests. When he found everything to be normal, he said he wasn't too concerned yet and to come back once I got around to having an MRI with contrast. If he had found some signs of neurological problems, then he would have been more concerned about MS.
I agree that you should definitely get copies of the MRI and reports. Start a folder and make it a habit of collecting everything as you get tests done. Before all of this, I didn't have a primary. I felt like I was going in a dozen different directions, seeing so many specialists and doctors, that I needed someone to kind of put all of the info together.
Your vision will most likely never be what it was before. It is great that you got much of it back, as some people do not. But often, once damage is done to the optic nerve, it is permanent.
If your MRI was only w/o contrast, ask for one with it.
Thank you everyone for your opinions! It makes me feel so much better hearing other peoples stories. I will def take the advice and go see a neuro-endo... I had 2 MRIs with contrast done and 2 without contrast so I felt like my opthamologist did a pretty thorough job. He doesn't really have any bedside manners and he gives brief, almost one word answers to everything so it makes me feel like I'm not getting all the info I need. I didn't even know that I was allowed to have copies of the MRIs. I never even got to see them. I would love to have a copy just for myself for later down the road in case something more develops. I have an appt with him again in july to check on how I've been doing so I will ask him for the copies then. Thanks again everyone!
I would not ask the doc for the copies as they will charge you - but if you go back to where you had the imaging done, you are entitled to one free copy on CD. Since it is past the time where the report is issued, ask for the report as well. It may already be encoded on the CD or you may get a paper report. You can call them up and they should mail a copy to you.
When I go for an MRI, I sometimes ask for a copy to be burned before I get the scan that way I just wait a few minutes after the scan and walk out with my own CD. I then call a couple of days later and get a report mailed for my own records. Most states, but not all, allow this I think and countries differ - weird how access to your own records can be difficult!
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