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LEMS and vision changes
@krzysztoffrompoland raised a good question on Monday regarding our vision.
I wanted to ask for input from the group about how many of you have vision problems?
Were these before or after your LEMS diagnosis?
I noticed a decline in my vision about a year after my LEMS diagnosis. Before that, I had 20/20 vision and never had any issues, so I didn’t visit my eye doctor as often as I should have. I noticed I began having problems driving because I was having a hard time reading street signs, especially at night. I also noticed problems with seeing things far away in general and difficulty reading a computer screen. I was diagnosed with LEMS at a pretty young age (26), so some of these changes could be the start of aging related vision problems. I’ve been told that in women it’s “normal” to have vision changes in late 20s and early 30s.
Did anyone else notice a decline similar to this after their diagnosis?
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10 Replies
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Ashley, I have had problems, including perceived double vision and blurred vision on occasion, perhaps when the LEMS is acting up. I’ve had difficulty seeing grocery store signage in the aisles, which is frustrating. One thing I did, when I felt I was pretty good with the LEMS, I went and got my eyes refracted. Then I went and bought new glasses. That helped a bunch. I still occasionally notice the blurry issues, but haven’t seen the double vision in quite a while.
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@pricewool
I also have some problems with this as well. Have you noticed any changes right after IVIG?
This may sound weird, but within the last 3-4 months, I’ve found that I “need” my glasses more the first couple of days after IVIG because things seem to be blurrier. Just wondering if anyone else has ever experienced this also.
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Once I was diagnosed and about to 3/4 Dep. my eyelid muscles sagged the muscles around my eyes weakened. I had triple vision circumnavigating interiors with multiple lights sources with glass and mirrors became impossible. Even as front passenger in a car was like some drug induced fragmented vision. If I ceased medication I presume I’d be back a fractured vision. The terrifying symptom for me was muscle loss in my throat !
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P. S! I’ve just realised my extreme visual experience can be explained because I have keratoconus. That’s when the eyes cornea is thickened in one spot causing the light to refract in a off kilter way. L. E. M. S. just emphasised this condition! So hopefully no will experience my extreme visual reactions!
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Mi hijo de 20 años que sufre de condición LEMS ha tenido problemas con su visión. Ciertamente sufre de su visión de lejos, también le da mucha molestia la claridad o luz del sol. Actualmente utiliza lentes correctivos. Al principio mientras se le ajustaba la dosis 3.4Dap también sufría de visión doble.
Google translate: My 20 year old son who suffers from LEMS has had problems with his vision. He certainly suffers from his far vision, the clarity or sunlight also bothers him a lot. He currently wears corrective lenses. At first while adjusting the dose 3.4Dap he also suffered from double vision
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@ghead
Thanks for sharing! Wow, that’s really interesting. I’m sorry you went through that, but I’m glad they were able to figure it out. Did you end up having surgery for the keratoconus?
@rafaelflores
Hmm, that’s interesting. Did he have problems with his vision before he had symptoms caused by LEMS? I am also pretty sensitive to sunlight, but I find my prescription sunglasses very helpful and carry them everywhere I go. I wasn’t a fan of the transition lens.
Hmm, eso es interesante. ¿Tenía problemas con su visión antes de tener síntomas causados por LEMS? También soy bastante sensible a la luz del sol, pero encuentro mis gafas de sol graduadas muy útiles y las llevo a donde quiera que voy. No era fan de la lente de transición.
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Hey Guys,
My vision kept getting progressively worse, as my undiagnosed LEMS kept getting progressively worse. My eye doctor and I attributed it to working for Verizon Wireless and being on screens all the time. When I was FINALLY diagnosed, and went through the crazy and insane loading dose of Solumedrol, things got really blurry. It scared me and they checked with my neuro- who assured them I needed to continue the loading dose. Well, on my last day I took off my glasses when I got settled into my infusion chair, and to my shock, the leaves on the trees outside the window were crystal clear!
I literally had to try various older scripts, that were weaker, to see which ones worked. My eye doctor was amazed and unfortunately, it perplexed my neuro.
I refused to continue with the solumedrol because of the dangers of high dose steroid treatment and the horrific side effects I went through (no one told me that the myasthenia can get worse, temporarily, with this treatment).
The good news is, as my treatment plan finally got worked out, my vision stopped changing and my glasses are no longer coke bottle thick magnifiers. LEMS can affect ALL muscles. For me, my autonomic system is affected the worst. Eye muscles are autonomic. Oh, and the other thing that happened once my treatment plan was figured out- my dry eye went away and I’m back wearing contacts again- yeah!
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Dawn,
Glad to hear that your vision has improved. Wish I could say the same. I still have very dry eyes and am unable to wear contacts and my vision continues to decline. I just got a new prescription for glasses in Jan and already notice that I will need something stronger next year because there are some things I still have a lot of difficulty reading. I do have blue light blockers in all of my glasses since I am on a computer for work a lot. I did see an eye doctor who specialized in myasthenia and he told me that my vision loss has nothing to do with the muscles around my eyes because they are still strong. Like you, I am not on any type of long term steroid for the same reasons you mentioned.
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@ashleygregory757, I have noticed visual changes over the last few months as well. Its definitely more blurry and looking at any screen or light enhances it. I wasn’t sure if it was the Firdapse or possibly the IVIG contributing to this acute worsening. I know Firdapse can cause some visual changes but I wasn’t sure about the IVIG. In the last month it has been very noticeable making it difficult to read at times.
Tescha
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@tcarr20
I don’t know if IVIG could possibly be causing it. It’s a topic I plan to bring up the next time I see my neurologist which should be in a few months. I do not take Firdapse currently because I was unable to take it 4x a day with work. I will let you know if my neurologist has an opinion on why this is happening.
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@ashleygregory757
Oh that would be great!!! let me know what you find out!!
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