My SIL has suffered from migraines for years. Just before Thanksgiving she went to an opthamologist for her regular exam. She began experiencing severe headaches after that appointment and began losing vision.

They did an MRI thinking it might be MS and optic neuritis, but no lesions. After all this time, they did an angiogram ? of the eye, and they can tell that her optic nerve is damaged, and the sight she has lost is gone for good. They tell her it could be lupus or MS, but nothing is showing up on the tests for now.

They are sending her tests to specialists in SLC, but until then, does anyone have any experiences similar to this that may shed some light on her condition?

I presented with migraines too. No eye problems such as losing vision.

Thing is, years earlier I had perfect vision. Suddenly that changed - and I mean one week I had an eye test, 20/20 vision, next week I needed glasses. My neuro asked what was going on at the time. I was working in really hot temps, and he thinks that may have been an early sign of ms.

My first MRI showed brain lesions, but all the other tests, no sign of ms.



I had C spine, T spine lumbar MRIS, EMG, EKG, EEG, blood work - no ms, ruled every normal mimic out. But I was dx'd with C spine disorders and a cyst in the T spine. 2 possible mimics, but not likely migraine makers. Hmmm.

My neuro said it can take years for ms tests to come out positive. But there are so many mimics it's scary. It could be a lot of other things. Hopefully, your SIL has a good team of docs who will keep on this until they figure it out for her.

Have they also tested her pituitary hormones - and did the MRI look at that? Was her MRI done with contrast? In what way is she losing her vision - central first or peripheral first? If it is peripheral first, please get her hormones checked by a pituitary specialist. The pituitary is right by the optic nerves and sometimes, well, the tumors are hard to see or it could be empty sella.
IGF-1, FSH, LH, ACTH, TSH, PRL, and Vasopressen should be tested. Really full hormone panels should be done but that is a start.

Thanks to both of you. I'll pass this info on. They didn't do the MRI with contrast because nothing at all showed up that looked even a little like a lesion (I know, they still should have done it! and a spine one!)

She is waiting to hear back from more specialists in Salt Lake, so we'll just have to see what happens.

I'll mention the hormone thing.

All I can tell you about the vision loss is this: They told her your eye is divided into three sections: the bottom half, and then the top half is split vertically two make two parts on the top.

The bottom section is completely black, one of the top sides is gray, the other is white.

My brother said she could only read a portion of each letter on the chart, I'm guessing the section that is white is normal, black is totally gone, and gray is fuzzy.

Of course this is from my brother, not the doctor!

Was she evaluated for pseudotumor cerebri? This is severe headaches, with loss of vision if untreated. It can only be diagnosed with lumbar puncture. If the lumbar puncture is elevated then certain diuretics are given to reduce the pressure. It leads to blindness if untreated.
Some drugs cause this. The tetracycline family (used long term in acne treatments or Lyme disease) and high doses of Vit A retinol are examples, but pseudotumor may occur spontaneously in people.

To the OP, please tell her to start taking cod liver oil (mercury free). Many people nowadays are lacking vita D because they cover up from the sun, wear UV prot. make-up, sunglasses...

Since vita C and vita A work together, this could be her problem.

If I were here, I would take the CLO (cod liver oil) and make sure she is outside at least an hour every day, exposing her skin and eyes to the natural light.

Have a neurosurgeon check the films carefully for Chiari Malformation. This is the herniation of the cerebellar tonsils in the lower back of the brain. Chiari (or "Arnold-Chiari," or "ACM," as it's often called) is often mistaken for MS, so any degree of herniation should be taken seriously. If one is found, do not allow it to be blown off as "a minor incident that has nothing to do with the symptoms."


Good luck!

LIZARD

Have they thought about Devic's disease? How about Hashimoto's Encephalopathy, though I'm not sure it causes eye problems. HE is diagnosed by checking thyroid antibodies, even if hormones are normal.

Sorry you guys are going through this.
Hope you get answers soon.