Hi All,
I am posting for my wife who has yet to have a positive diagnosis for MS, though her doctors believe she may indeed have it. For the sake of cutting through the clutter of our long and detailed story, I will break it down to bullet points:
- Started having pain and vision loss in left eye 3 years ago.
- Tested negative via spinal tap and MRI for MS, diagnosed with unexplained (possibly pre-MS) optic-neuritis and treated with intravenous steroids. The condition then went away.
- For the next year and a half, she had sporadic flare ups that would generally go away in a few days, treated only with NSAID's.
- About 18 months ago, began to have a more severe flare up, this time in her right eye, with nothing in her left eye.
- Put back on oral steroids but the condition worsened.
- Beginning a few months ago, noticed progressive loss of vision in her right eye, now she has lost most of her vision in that eye.
- Has sought advice from a neurologist, a neuro opthamologist, and a rheumatologist. All have basically said they are at a loss for what could be causing this and are suggesting chemo-therapy, even without a diagnosis.
At this point, we are both very afraid because although she has only lost vision in her right eye, this started in her left eye. She is terrified of going blind and we can't find any doctor to help us. Thankfully, money is not an issue for us and we just want the absolute best treatment available.
If anyone on here can offer any experience or advice on what this might be or where we can go for treatment, I would be so grateful to you. I understand this forum is for people living with MS, but the doctors seem to think this could still be an early sign for her. We are at a loss here...
I am posting for my wife who has yet to have a positive diagnosis for MS, though her doctors believe she may indeed have it. For the sake of cutting through the clutter of our long and detailed story, I will break it down to bullet points:
- Started having pain and vision loss in left eye 3 years ago.
- Tested negative via spinal tap and MRI for MS, diagnosed with unexplained (possibly pre-MS) optic-neuritis and treated with intravenous steroids. The condition then went away.
- For the next year and a half, she had sporadic flare ups that would generally go away in a few days, treated only with NSAID's.
- About 18 months ago, began to have a more severe flare up, this time in her right eye, with nothing in her left eye.
- Put back on oral steroids but the condition worsened.
- Beginning a few months ago, noticed progressive loss of vision in her right eye, now she has lost most of her vision in that eye.
- Has sought advice from a neurologist, a neuro opthamologist, and a rheumatologist. All have basically said they are at a loss for what could be causing this and are suggesting chemo-therapy, even without a diagnosis.
At this point, we are both very afraid because although she has only lost vision in her right eye, this started in her left eye. She is terrified of going blind and we can't find any doctor to help us. Thankfully, money is not an issue for us and we just want the absolute best treatment available.
If anyone on here can offer any experience or advice on what this might be or where we can go for treatment, I would be so grateful to you. I understand this forum is for people living with MS, but the doctors seem to think this could still be an early sign for her. We are at a loss here...
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