Diagnosed Hello All! Any help for ophthalmoplegia?

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vender
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Diagnosed Hello All! Any help for ophthalmoplegia?

Post by vender » 2 years ago

Hello All, My name is Mark 46. Well I have been Diagnosed with MS. I have had Internuclear Ophthalmoplegia for 5 months now and really want it to end. Does anyone have any help for this? Drugs? Treatments? Anything? I did get three infusions of steroids that really helped but after two weeks the effects are not as good. I am getting bad dizzy spells again. Im still waiting on my Neuro but want some information on what MS people are doing for this.
Thanks for your help
Mark

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

Post by Froggie » 2 years ago

Hi Mark-

I'm sorry to hear of your diagnosis. This is a good place to research and vent if need be. That being said, I've had my share of eye problems. I've had Optic Neuritis, bilateral inferior hemianopia and double vision to name a few. My eyes are usually the first thing to go south with a major relapse. Steroids are the only thing that seem to help and my vision usually returns within a week. I have decided not to drive anymore, as my depth perception is lousy and I have poor reaction times.

As for physicians, I would recommend a neuro-ophthalmologist. I know glasses are not fun (I now wear bi-focals!) but they can be of great assistance in MS cases. There are probably other things you can do, and anyone else is free to chime in. Hope this helps!

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Re: Diagnosed Hello All! Any help for ophthalmoplegia?

Post by Snoopy » 2 years ago

Hello Mark,

I am sorry you have been diagnosed with this disease.

My experience with Internuclear Ophthalmoplegia (INO) started late January of 2014, up to that point I had never had any visual issues due to MS. I still have INO but my eye has adjusted, somewhat, so I don't find it quite so bothersome. As with anything related to MS: any symptom has the ability to improve or resolve but can also be permanent --- only time will tell. There really isn't much for options when dealing with INO. Have you tried prisms to see if that would help? If not it might be something to discuss with your eye Dr. Another option: Balance training. It won't fix INO but allows your body and brain to compensate and may help with being dizzy. Your eyes are not working (tracking) together which can cause the dizziness you are experiencing.

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

Post by vender » 2 years ago

Hello All, Thanks for the responses. I am seeing a neuro Op, he's the one that diagnosed me with IO both eyes. I did have to get Bifocals. The neuro Op is waiting to write me a new script for newer glasses. I just got my new glasses, but he says I need newer ones. I am a licensed builder and if only the dizzy would go away...... I think I could get on with life?. I am new to this MS. I have no idea what to look forward to.. I am still waiting for my next neuro appointment.
Thanks All!

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

Post by vender » 2 years ago

Im going to vent and whine. This SUCKS! I am newly diagnosed and already I am not liking what I am seeing (no pun intended). This INO is BS! Go away already! I am a very physically active person and cant even work! What does the doctor mean "I have ten years"!? Sorry I am realizing that this sucks more than I thought it would.... Ten years? for what?

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

Post by Snoopy » 2 years ago

Hi vender,

Agreed...MS sucks.

I'm sorry you have INO, your Central Nervous System has damage on the visual pathways and your eyes are not getting the correct messages. The damage can heal and allow the visual pathways to work properly again. But, sometimes the damage is permanent and the person will always have problems with INO. Only time will reveal if your INO will improve. Sometimes prisms help, sometimes they don't.

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

Post by vender » 2 years ago

So i have been diagnosed by my Neuro and my Neuro Opthamologist. I am seeing my MS neuro on monday and would like to know what I should be asking her and what meds should I be asking about. I pretty much feel like shit and am blaming INO for everything. I am taking no meds at the moment and I have to believe that their is something that would help. The last thing they did was three days of steroid infusions that are no longer helping. Thanks for your help.

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

Post by lyndacarol » 2 years ago

vender wrote:So i have been diagnosed by my Neuro and my Neuro Opthamologist. I am seeing my MS neuro on monday and would like to know what I should be asking her and what meds should I be asking about. I pretty much feel like shit and am blaming INO for everything. I am taking no meds at the moment and I have to believe that their is something that would help. The last thing they did was three days of steroid infusions that are no longer helping. Thanks for your help.
If you have never had a vitamin D blood test (the 25-hydroxy D test), ask your MS neuro on Monday to order one for you. It is easy (a blood test), inexpensive ($50-$70, but insurance usually covers it), and could be very informative. Remember to ask for your own copy of the test results – it is important to have the actual numbers.

Vitamin D is necessary for every system in the body to operate properly – even in the optic nerve and vision. (By the way, steroids are NOT good for vitamin D!)

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

Post by vender » 2 years ago

lyndacarol wrote:
vender wrote:So i have been diagnosed by my Neuro and my Neuro Opthamologist. I am seeing my MS neuro on monday and would like to know what I should be asking her and what meds should I be asking about. I pretty much feel like shit and am blaming INO for everything. I am taking no meds at the moment and I have to believe that their is something that would help. The last thing they did was three days of steroid infusions that are no longer helping. Thanks for your help.
If you have never had a vitamin D blood test (the 25-hydroxy D test), ask your MS neuro on Monday to order one for you. It is easy (a blood test), inexpensive ($50-$70, but insurance usually covers it), and could be very informative. Remember to ask for your own copy of the test results – it is important to have the actual numbers.

Vitamin D is necessary for every system in the body to operate properly – even in the optic nerve and vision. (By the way, steroids are NOT good for vitamin D!)
I have had Every test done blood csf mri cmp mra dna ecg..... But not D. It must have been covered by some other blood work. I get all my results on-line. I will ask but what could it possibly tell me that all those test have not already? I eat great and take a daily vitamin.

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

Post by lyndacarol » 2 years ago

vender wrote:I have had Every test done blood csf mri cmp mra dna ecg..... But not D. It must have been covered by some other blood work. I get all my results on-line. I will ask but what could it possibly tell me that all those test have not already? I eat great and take a daily vitamin.
The vitamin D test (25-hydroxy D) is not part of any standard blood panel. It must be requested specifically.

It measures the bulk storage form of vitamin D in the blood. This Vit D form is then converted in the kidneys and in every cell into the very potent form that is used in every cell, in every tissue, in every system of the body. It is necessary for making and reading DNA. Whichever system is the weakest will be the one affected by vitamin D deficiency.

Eating a great diet and taking a daily multivitamin will not supply enough vitamin D. (A multivitamin usually has about 400 IU of vitamin D; a small amount of vitamin D is found in wild salmon, grass-fed meats, and a very few other sources.) Historically, the human body makes vitamin D precursor in skin when the skin is exposed to a narrow band of ultraviolet B rays in sunshine. An outdoor worker at the equator will make 10,000-20,000 IU of vitamin D per day.

When you know the current status of your serum vitamin D, you can discuss a plan to normalize it with your doctor (if the level is below a more optimal 60 ng/mL). I direct you to http://www.GrassrootsHealth.net for general information on vitamin D; and to their chart for increasing the serum levels (http://grassrootshealth.net/media/image ... single.pdf)

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

Post by vender » 2 years ago

Ah back to my questions. Lyndacarol, I think the doctors know what to test for. Great website willing to sell you a whole bunch of things. So I guess thisisms has no policy against posting adds? Thanks for your response but really? All the test and doctors I've seen and Its all about vitamin D? Stop it. I came here for help not adds. Maybe I should just put some butter on my lesions and eyes. Whatever. Do you know what Internuclear Ophthalmoplegia is? Do you even have MS or are you trolling around here for your website?

Can someone recommend real meds? From real experiences? Someone who REALLY has MS. I don't need grassroots crap! I need real life information.

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

Post by lyndacarol » 2 years ago

vender wrote:Ah back to my questions. Lyndacarol, I think the doctors know what to test for. Great website willing to sell you a whole bunch of things. So I guess thisisms has no policy against posting adds? Thanks for your response but really? All the test and doctors I've seen and Its all about vitamin D? Stop it. I came here for help not adds. Maybe I should just put some butter on my lesions and eyes. Whatever. Do you know what Internuclear Ophthalmoplegia is? Do you even have MS or are you trolling around here for your website?

Can someone recommend real meds? From real experiences? Someone who REALLY has MS. I don't need grassroots crap! I need real life information.
Apparently I offended you; I apologize; it was not my intention to do so. I thought I was offering the "Any help for ophthalmoplegia?" that you were seeking.

I sincerely wish you the best.

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

Post by vender » 2 years ago

lyndacarol wrote:
vender wrote:Ah back to my questions. Lyndacarol, I think the doctors know what to test for. Great website willing to sell you a whole bunch of things. So I guess thisisms has no policy against posting adds? Thanks for your response but really? All the test and doctors I've seen and Its all about vitamin D? Stop it. I came here for help not adds. Maybe I should just put some butter on my lesions and eyes. Whatever. Do you know what Internuclear Ophthalmoplegia is? Do you even have MS or are you trolling around here for your website?

Can someone recommend real meds? From real experiences? Someone who REALLY has MS. I don't need grassroots crap! I need real life information.
Apparently I offended you; I apologize; it was not my intention to do so. I thought I was offering the "Any help for ophthalmoplegia?" that you were seeking.

I sincerely wish you the best.
I looked at your other post and they are all for your website. You post all over this site about your website trying to sell your products. Yes it is offensive. Stop it! Sell your crap some other way. Stop praying on the sick! People like you are pathetic! YOU DONT EVEN HAVE MS! How the hell is your site going to help INO? What do you know about INO that ALL neuros don't? Whatever. Stop posting you are no help at all. You suck apology not accepted.

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Re: Diagnosed Hello All! Any help for ophthalmoplegia?

Post by jimmylegs » 4 months ago

hi vender i don't know if you ever noticed this 2018 internuclear ophthalmoplegia story: http://www.thisisms.com/forum/daily-lif ... ml#p252832
i worked thru my little ('driver's' side - not in the uk that is haha) INO adventure between march 12 and april 10 of this year.
all better with no meds at all - just exercises (well, those and a loooong overdue top-up on some relevant essential nutrients).
how did your INO end up?
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!

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

Post by vender » 4 months ago

Bilateral. Doc says it's not going to go away. Get used to it.

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