I have a loved one (healthy female in her 30s) that suddenly developed double vision. After seeing an Opthamologist and getting an MRI done on her brain and optic nerve, her opthamologist is concerned about the potential of MS. The vision has since returned back to normal for the most part.

Drop txags92 a PM, see if he can help. Idk if he saw this post.

jjdavis85 said:

---

I have a loved one (healthy female in her 30s) that suddenly developed double vision. After seeing an Opthamologist and getting an MRI done on her brain and optic nerve, her opthamologist is concerned about the potential of MS. The vision has since returned back to normal for the most part.

---

Sorry, just saw this. I have had MS for nearly 20 years and have been seeing Mary Ellen Vanderlick (Mary Vanderlick, MD of Neurology Consultants of Houston (houstonneurologyclinic.com)). She is not an MS specialist, but is a general neurologist that deals with a wide variety of issues. I like her because she is willing to take the time to sit with me and look at the MRI scans and tell me what she is seeing and why she thinks we ought to do what she is suggesting. She is located in Bellaire and is reasonably easy to get an appt with relative to what I have seen or heard about from some other neurologists.

If you want to see an MS specialist, go to the Maxine Messinger MS Clinic down in the medical center (Maxine Mesinger Multiple Sclerosis Clinic (bcm.edu)). Dr. George Hutton is the guy I would want to see from their doctors, but he is very much in demand and it may take some time to get an appt through them.

With regard to MS in general, I had a very similar first set of symptoms and path. I lost all the hearing in my left ear in my early 30s and an MRI to look at my brain and nerves to my ear showed a couple of lesions that were suggestive of MS. I started getting my hearing back after about 8 weeks and it took another 2 years before I got a Dx of MS. Hearing issues are kind of rare as a first symptom, but vision issues are extremely common first symptoms.

Just know that seeing spots in the brain with a patient in their 20s and 30s, particularly female, the "default" diagnosis is "possible MS". The neuro will want to do a lot of other tests to rule out other things and it may take a lot of time and testing to settle on an exact diagnosis. There is no one test for MS, so they kind of have to rule out other things it could be before MS becomes the last thing standing that fits the results.

My advice before going to any neurologist appt is to read up on the McDonald Diagnostic Criteria for MS (McDonald criteria | MS Trust). I originally had 2 lesions when I had an MRI right after my hearing loss. By the time they got around to doing a lumbar puncture for testing my spinal fluid, it was over a month after the hearing loss and things were starting to come back. When they do a lumbar puncture, one of the things they look for are what are called "oligoclonal bands" in the spinal fluid that are markers of the damage caused by active MS lesions. I did not have them, but I have also never had an MRI when I had active lesions either. So according to that criteria, my neurologist told me that I had lesions that were suggestive of MS, but that she didn't have other evidence to establish that it was MS (meaning I had only one clinical episode of symptoms, no oligoclonal bands, and only two lesions on one MRI scan).

To me it sounded like she was saying "I don't think this is MS". What she was really saying was "I can't call it MS yet, because the insurance companies won't accept a diagnosis that doesn't meet the McDonald Criteria (and MS meds are generally $3-6k per month, so insurance coverage of the treatment is very important). She had me coming back for MRIs annually after that first one, and 2 years later, I had 7 lesions instead of 2, so she said "Now you meet the criteria and I can call it MS". I hadn't read the criteria, so her pronouncement shocked me at the time. So now, I tell everybody to read up on the criteria before their first neuro visit so they understand what the neuro is telling them.

If you or your loved one have any other questions or want more info, please let me know. Reading about MS online can scare the hell out of you initially, but we are in a far better place now than we were 20 years ago when I was Dxed. We had 3 treatments then, now we have something like 26. We don't have a cure yet, but there are some promising research findings coming out about possible myelin repair avenues to explore. I hope your loved one doesn't have MS, but if she does, Houston's medical center is one of the best places in the world for helping her beat it.