I’ve posted this on the symptoms board. I’m posting it here as well because I really need help with this.
For some time (years) I’ve had eyesight problems. I have an eye test, get new glasses, but my sight isn’t as sharp as I’d like it to be. For at least the past year my sight has been so bad that I can’t read a number plate at 20m, so I can’t drive. I recently found that raising my glasses slightly gives a marginal improvement, but I’m not sure it’s enough. There’s nothing the optician can do with the lenses. When I’ve seen an opthalmologist my sight with these glasses seems to be 20/20, but that’s probably because the chart is only about 6 feet away. My eyes are healthy-ish (early stage cataracts, but not enough to cause this problem), and I know I don’t have macular oedema, so it may not be caused by the Gilenya I’ve been taking for the past 12 years.
(The only way to confirm it’s not Gilenya causing the problem is to come off the drug and see if things improve. It would take about two months for the drug to clear my system. If it is Gilenya, I would then have to find another DMT. Interferon and Copaxone aren’t an option - I discovered that Betaferon had been causing depression, and I’m not doing injections again!)
My eyesight isn’t blurry. For reading and close work it’s pretty sharp. It’s distance that’s the issue. Has anyone else had this problem?
I informed the DVLA when I was diagnosed back in 2004. I was cleared to drive and I do not have to renew my license. I think I was among the last who don’t have to renew.
I know that distance lenses should be effective from a few feet upwards. The issue I have is that mine aren’t. I’ve had eye tests at different opticians. They all give the same prescription. I have glasses made to that prescription. They don’t work. As I said, my eyes are healthy apart from very early stage cataracts that aren’t bad enough to cause problems. I’ve been to the opthalmology department of the local hospital and they couldn’t see any reason why I could read an eye chart a few feet away but I couldn’t read a number plate at 20m. One opthalmologist said I was OK to drive. I disagreed. You don’t need to tell me I shouldn’t drive. I haven’t driven for a long time because I don’t think my sight is good enough.
Vision is actually very complex. It goes far beyond the optics in the eye to the processing in the brain.
The eye chart and surroundings may be a simpler image to process than a numberplate in a real world environment. The eye “sees” the image but the brain interprets it.
I know my mother, with somewhat limited sight, sometimes sees things that seem not to make much sense but when you get yourself into her position you can see how she is interpreting the image.
As we age the eye becomes less able to adjust which is why we end up with two pairs of glasses, bi-focal or varifocals.
Not sure if brain fog can disrupt the brains ability to interpret images.
I have been wearing glasses for more than 50 years. The problems with my eyesight are comparatively recent - the last few years or so. This gives me two potential causes. One is Gilenya, which I have been taking for about 12 years. I don’t recall having this problem before I started taking it. The other is MS. That’s why I’m asking if anyone else has had similar problems. (The only vision-related side effects listed for Gilenya are blurred vision and macular oedema. I don’t have oedema and I don’t think my vision is blurred.)
I have major issues with my eyes possibly due to lesions in my brain stem (feedback from a professor) causing convergence (I literally go blind) but I’m guessing the ophthalmologist would have picked up on any eye movement related disorders. But I’ve found the opthamology department don’t really specialise in brain related eye issues as if your optic nerve looks ok they say it’s not ms…so maybe bring it up with your neuro if you haven’t already xx
“…bring it up with your neuro…” Sore point. I haven’t spoken to my neuro since before the pandemic. Two appointments fell through for various reasons. I have a phone appointment with my MS nurse next Tuesday. There’s a number of issues I need to raise with her including neuro appointments, my eyesight and the MRI scan that was supposed to be happening five years ago!
Thanks for your reply. I must get in touch with my neuro and get an appointment ASAP.
I saw my optician again yesterday. I found that I can see a bit better if I look through the lower region of my glasses. They can’t make lenses that would allow me to use that part of the lens, so I’m stuck with glasses.that don’t work.
I’ll raise the issue with my MS nurse on Tuesday and I’ll also get in touch with my neuro. If I’ve got to come off Gilenya I need to know what alternatives are available to me.
I saw my neuro on Monday. I asked if my loss of vision could be a side effect of Gilenya. He said no, blurred vision as a side effect comes on early in taking the drug, not over a period of years. He was so concerned that after our session he took me to the neuro-opthalmology department and asked them to check my eyes. Two things came out of the tests they did:
The problem with my right eye is a lamellar macula hole. This is a hole in the retina that affects reading and seeing detail. The hole is caused by pposterior vitreous detachment which happened about seven years ago. I won’t go blind but the only treatment is surgery.
I don’t have optic neuritis in my left eye. The ophthalmologist said the nerve looks healthy, but there’s something wrong with the pupil. I may get some sight back in the left eye after surgery. She wants an MRI scan to check the health of my eyes and see if there’s anything else wrong.
I was told last year that nobody would be prepared to do surgery on my right eye because complications could leave me blind. Apparently there is at least one surgeon at the QE in Birmingham who doesn’t mind a challenge and may be willing to treat my left eye. I have limited vision in that eye, so I’m prepared to take a chance. They may even do my right eye if the operation on my left eye is successful.
I’m trying not to get my hopes up too much, but just the possibility of two working eyes is something I never considered possible. Wish me luck!
Situation since my last post: the macular hole wasn’t causing the problem, it is a minor issue. The problem was caused by my cataract. The cataract was removed in September 2023 and my eyesight improved immediately. The question that arises is this: I’ve seen at least five different ophthalmologists over the last few years and none of them connected my worsening eyesight to cataracts. Were my symptoms really that unusual, or is MS involved somehow? Which makes me wonder if the problem will recur in some way. Hope not, because I have good distance vision for the first time in more than 50 years, and I’m using cheap reading glasses instead of expensive distance glasses.
My left eye is pretty much useless, although the ophthalmologist at the QE in Birmingham says she knows a surgeon who may be prepared to operate on it. He has a 12 month waiting list, so I’m not holding my breath on that one.
