Diagnosed Hello All! Any help for ophthalmoplegia?

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jimmylegs
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Re: Diagnosed Hello All! Any help for ophthalmoplegia?

Post by jimmylegs » Sun Sep 02, 2018 7:20 pm

yuk. interested in any exercises (literally exercise - far from cardio. a several times a day regimen involving directional gaze stretching)? i worked through mine, based on finding and using/modifying rehab publications in the literature (whew full text access). zero help from docs. i wonder if you would see any improvement after all this time. want to try? i have all the regimen info, if you are interested.
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Re: Diagnosed Hello All! Any help for ophthalmoplegia?

Post by vender » Mon Sep 03, 2018 6:16 am

I did PT for my eyes. Thank you.

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Re: Diagnosed Hello All! Any help for ophthalmoplegia?

Post by jimmylegs » Mon Sep 03, 2018 6:36 am

and it didn't work? ugh.
my regimen (as found in the lit) needed a personalized tweak before i started to make gains.
what did your PT entail exactly?
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Re: Diagnosed Hello All! Any help for ophthalmoplegia?

Post by vender » Mon Sep 03, 2018 7:46 am

It was a while ago. But I remember exercising both vertical and horizontal gaze? And placing a ball on a cone. They had a good program and really tried. From talking to Nuro ophthalmologist it appears that there is no help for bilateral. A doctor at Loyola university studies I know Dr. Timothy Hains? He also said Valium is the only treatment. I found a study that is finding the new MS walking drug Ampyra to also be affective for BINO. CRAZY IF TRUE!!

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Re: Diagnosed Hello All! Any help for ophthalmoplegia?

Post by jimmylegs » Mon Sep 03, 2018 8:30 am

hi again, interesting. did you work on one eye at a time, or both simultaneously? did they say you have nystagmus as well?
when i was working on mine i stayed out of the ms literature, but now i see this case. similar to yours? https://www.nejm.org/doi/full/10.1056/nejmicm1200499
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Re: Diagnosed Hello All! Any help for ophthalmoplegia?

Post by jimmylegs » Mon Sep 03, 2018 8:50 am

from the protocol i adapted:

"For each muscle that was affected by ophthalmoplegia, facilitation exercises performed in one direction were repeated 10 times/min for 10 min, 100 times a day, five days a week for four weeks. In patients with right adducent palsy (right oculomotorius nerve palsy), the therapist turns the patient's head quickly to the right. When facilitation exercises were applied in two directions (left and right turns) in patients who had bilateral ophthalmoplegia (adducent or abducent palsy in both eyes, or adducent or abducent gaze palsy in one eye), the second session was performed one hour after the end of the initial session.
...
Typical improvements of abduction nerve palsy in the left eye of patient no. 2, right eye of patient no. 4 and bilateral eyes of patient no. 7 are shown. In the subjective assessment of vision, all eight patients reported that they had 'improvement in vision' following four weeks of facilitation exercises.
...
Patient no. 7 showed improvement of abduction in the right (lower right panels) and left eyes (lower left panels)."

i can't link you up to the photos online, and don't have a readily accessible place to put a screenshot either, but the before and after shots show dramatic improvement on both sides.
i was bored of this protocol not doing anything for me, after three days in (never mind 4 weeks lol). after modifications, things got better right away and kept getting better incrementally until eyesight was back to normal.

also there's a bit more protocol info that i posted earlier here http://www.thisisms.com/forum/daily-lif ... ml#p252726
the bit that leaps out "Facilitation exercises improved ophthalmoplegia not only in patients who had developed ophthalmoplegia relatively recently, but also in patients with chronic ophthalmoplegia who did not show improvement during the initial two-week basic rehabilitative treatment."
(the initial two weeks did not involve this exercise regimen at all)
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Re: Diagnosed Hello All! Any help for ophthalmoplegia?

Post by jimmylegs » Mon Sep 03, 2018 10:13 am

oh sweet - google image search yielded a snippet. this slide the bottom right figure shows patient 7's improvements on one side only. full text shows both sides obvi.
patient 4 improvement, shown just left of patient 7 below, was a unilateral case i think.

Image
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Re: Diagnosed Hello All! Any help for ophthalmoplegia?

Post by vender » Mon Sep 03, 2018 10:40 am

Thank you for the info. I was told I have bilateral lesions on my brainstem. I can only tell you it was years ago when I did PT. I was also told I had an "unusual" case of BINO. My Neuro Opthamologist is pretty blunt. He said prism glasses won't work for me and even glasses will just frustrate me. "GET USE TO IT!!" Is the answer I got.

I hate to sound stupid but after years of me researching I have given up. This is a very old post. LOL :-)

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Re: Diagnosed Hello All! Any help for ophthalmoplegia?

Post by jimmylegs » Mon Sep 03, 2018 2:05 pm

i had brain lesions to match my INO as well. they scanned me as soon as they could squeeze me in after my first trip to emergency.
seriously though, it was day one after i tweaked this protocol that i started to see positive impacts.

i've never been told i was an unusual case, but i also wasn't given any strategies by my health care pros to help with my problem (i didn't ask, so if they had any suggestions who knows what they might have been). i'm curious what your neuro-ophthalmologist would have to say about that paper in which bino had marked improvements.

when this routine worked for me, it was all solo. if i hadn't had academic access, i never would have found this research even if i tried.
i hope you will reconsider giving up, when you could be 24 hours away from improvement!
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vender
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Re: Diagnosed Hello All! Any help for ophthalmoplegia?

Post by vender » Tue Sep 04, 2018 8:20 am

I am going to see if my PT wants to try this.

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Re: Diagnosed Hello All! Any help for ophthalmoplegia?

Post by jimmylegs » Tue Sep 04, 2018 3:50 pm

awesome!!

fwiw i did the whole process entirely alone. only time i went to the neuro was to get her green light for driving again.

i originally thought i would only need to stretch right gaze for my left eye.
so at first, as described in the protocol i held my hand over my own right eye, and instead of looking at the therapist's face i looked at a focal point straight ahead, like right now the cherry tree trunk outside the window.
then, still keeping right eye covered, rotated my read abruptly to my left while working to keep my left eye on that forward focal point.
obvi if we need 10 stretches a minute, that's a 6 second count for each cycle
so i would start counting 1,2,3 as soon as i turned my head left (consistent with protocol which says 2-3 second stretch each time), then return my head to the front again for 4,5,6. right eye covered throughout.
i would repeat that 10 times and consider it the first one minute set.
then rinse and repeat until 10 sets were complete.

for three days nothing particular happened but then i realized i needed not a hard 3 o'clock right gaze by itself, but an rotating upward right gaze stretch, ranging from about 1 to 2 o'clock.
so instead of just turning my head left i would keep my eye on my focal point but drop my chin down and to my left, aiming my chin in a sort of 730 kind of direction.
to enhance the stretch i would roll my chin a bit between 7 and 8 o clock, while maintaining the hard upper right gaze on the focal point.

gradually things improved. one fridge across the room, not two. down to one tree across the patio. one chimney across the yard, not two. a single line of trees along the cliff, not a double row. and finally, one set of lines down the centre of the road and not a long v. (added bonus three cars on the road not six omg lol)

for me it was really easy to work on alone but i also know for sure i could feel the stretch working when i had the right angles.
i don't know if you can feel or resist tension in the muscles around your eyes.
i hope you can, and i hope the PT thinks this protocol could work for you! :)
take control of your own health
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ask for referrals to preventive health care specialists eg dietitians
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Re: Diagnosed Hello All! Any help for ophthalmoplegia?

Post by jimmylegs » Wed Sep 12, 2018 6:30 am

vender check out this week's PT SUCCESS!!! (not even an INO dx in this case, but the technique still seems to be working :D )
http://www.thisisms.com/forum/undiagnos ... ml#p254863
Hi! So I’ve done the PT stuff the last two days and I can’t believe the difference! Could be coincidence but I really think it has helped. Yesterday was the first day I saw significant improvement, and today I feel like my vision is almost fully back to normal! I kind of played around with the angle a bit as well and could tell it was more of a stretch to angle my chin a bit more to my right shoulder when I would bring my head back to center, and last night when I did it I could feel it wasn’t pulling the same way, but still maintained the angle since I noticed such improvement. It never hurt, just felt tense the first night. Not sure if that makes sense the way I’m explaining it, but I could definitely tell when I was getting the affected muscles. Can’t thank you enough, I really think by tomorrow it will be even better, maybe I can drive myself to work tomorrow night :-D
take control of your own health
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Re: Diagnosed Hello All! Any help for ophthalmoplegia?

Post by jimmylegs » Fri Sep 14, 2018 5:33 pm

hey vender :D sounds like gg keeps on getting better :) hope you are inspired to try a little home PT out for yourself. gg's experts couldn't tell her why she had diplopia at all, just shrugged and sent her home.

also if you could pls make this your avatar somehow, that would be great ;) lolol


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Re: Diagnosed Hello All! Any help for ophthalmoplegia?

Post by jimmylegs » Thu Sep 20, 2018 3:58 am

hey there, had you seen this update from gg?

"My vision has been great, even at a distance everything seems to be single. Hard gaze to the right still leaves a bit to be desired so I’m going to jump back into the PT tonight."

made any attempts yourself yet??
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ask for referrals to preventive health care specialists eg dietitians
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Re: Diagnosed Hello All! Any help for ophthalmoplegia?

Post by jimmylegs » Sat Sep 22, 2018 2:58 pm

vendervendervendervendervendervenderrrrrr
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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