Hi everybody ( I just joined), I wanted to see if anyone had any advice on what I should do now? Or if anyone has heard of my medical situation because I can’t seem to find anyone online that has dealt with this. Warning: THIS IS GOING TO BE LONG. So initially I noticed my vision wasn’t “right” one day completely out of the blue in summer 2011. By that I mean it seemed hard to focus on the words I was reading and I had very decreased reading comprehension. At that time I was currently enrolled in graduate school having finished 1 of 4 years. For the next two years (2012-2013) I pushed myself through school studying two to three times more to compensate for my lowered reading comprehension while barely passing my classes. During those two years I saw an optician (didn’t find anything wrong), opthamologist (thought it was convergence insufficiency and referred me to orthoptic), and a orthopic (who told me it wasn’t convergence insufficiency and spend a whole year having me test out differing glasses strengths because she thought vision therapy wouldn’t help) who couldn’t figure out my problem. In 2013, I had to take medical leave from my program with only one year remaining because of my vision issues. Also, I have OCD about specifically vision issues (manifested itself freshman year of college before vision problems) so when my vision is difficult to read with I’m constantly bombarded with anxious feelings. In 2014 I worked with a qualified opthamologist who tried to help but couldn’t. I also attempted to return to school in spring 2015, but I got very sick and had bell’s palsy during the semester. A week after bell’s palsy subsided I started experiencing my vision fluctuating involuntarily from clear to blurry and back and forth every 30 seconds or so continuously all day every day since then. I have a pressure that builds up behind my eyes that happens right before my vision blurs and then alleviates right before my vision returns to clear. In 2015, I was referred to a vision therapist who tried treating me for dry eyes (didn’t help) and then had me do vision therapy. At this point I actually started seeing definite improvement until early 2016 when essentially all my improvement disappeared one day reverting back to blurry clear fluctuations. At that point I saw my primary doctor who had me do a MRI. After that I was diagnosed with relapsing-remitting MS and referred to an neuro-opthamologist. When I saw him I was only suggested treatment for dry eyes. So I’m at a loss for what to do now. I was hoping that since my MS diagnosis it would be clear what my vision issues are. I know there are a lot of different visual disturbances caused by MS lesions on specific parts of the brain/nerves. But I’m just not sure who else to ask. I just want to know if they can diagnose me or if they don’t know. It’s fine if they don’t know because i get that MS is very complicated. But I just want a definite answer about my situation so I can move on with my life. I’ve been on leave since 2013 and the school has been more than lenient. However, I just got married and need to pursue a career (working as a security guard now since there’s no reading) whether I can read well or not. But the doctors just don’t seem willing to either diagnose me and treat me or tell me they do not have any solution. Instead I’m given try this and that (even though I’ve already tried certain things they’re telling me to try such as treatment for dry eyes). I’m just looking for advice. Has anyone heard of a ms related problem like mine? I’m assuming it’s MS related because if not I should have been diagnosed by now. My tests always come back normal with 20-20 vision and no optic nerve damage. Also, what would you guys suggest I do next? I really don’t know at this point. I messaged a couple doctors asking their opinions.
I am sorry that you are having a horrid time. Clearly you are not from the UK, and so I have nothing to offer in terms of where you seek advice next - your understanding of your own healthcare system will be better than most of us on here on this UK site. If you have an MS dx, it does seem strange to me that you do not have a specialist advisor who will help you to decide what treatment might help you - either with the symptoms or with modifying the course of the disease. I am sorry that you feel so much in the dark about this.
All I will say is that I have had MS for a while now and have over the years had vision problems (double vision, and visual field loss) that have arisen from MS lesions on my brain, rather than trouble with the optic nerves (although I have had a bit of ON too). In both cases, the MRI scan showed lesions exactly where the neurologist and/or ophthalmologist expected to find them, given my symptoms - so the MRI scan just confirmed what they pretty much knew already. (I have to say that my vision was obviously wonky - there was no question about whether there was a problem or not.)
Good luck.
Alison
Thanks for the reply! Yeah I’m from the U.S., but for some reason when i searched for multiple sclerosis forums this was the first one to pop up. My apologies. I do have a group of doctors that I return to occasionally to keep tabs on my disease. However, he didn’t see any lesions on the brain that would correlate to the vision issues I’m having. He did say that MS affects vision in unusual ways so it’s still possible it’s affecting my vision but they can’t see it. I’ve been to so many opthamologists that I have to assume that it’s MS-related but that the doctors just can’t figure it out and treat it. Was your vision ever able to be treated? Or do vision related disturbances largely remain untreatable? Thanks
I am sure I can speak for all of us in bidding you most welcome on here - we have regular posters from all over the world and it is always nice to meet a new virtual face. My point about this being a UK-based forum was simply that we probably are not the place for practical knowledge of the US health system. But as far as MS goes, of course, we are all in the same boat!
Thank you for enquiring about my vision. I am glad to say that Dr Time resolved those relapses (or the vision part of them, anyway) pretty well. The double vision was one of the things that got me dx’ed. The visual field loss happened when I had been on Avonex for a number of years, and was one of the main things that caused me to switch to the Tysabri that I have now been on for five years or more.
Alison