Optic neuritis

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
Jessica200131
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Optic neuritis

Post by Jessica200131 » Tue May 07, 2019 12:07 pm

Hello everyone

I am not diagnosed with ms but around the beginning of april i woke up and could barely see out of my right eye, double vision on times and colors were faded looking. I waited for few days to go to doctor thinking it would go away or i imagined it. But anyways after a few days it got worse .. To the point i could no longer do my hair or make up which sounds selfish i know but that is how i noticed something really was wrong with my eye. So i ended up going to hospital to get checked out because at that point i barely trusted myself to walk, let alone work. No one could find anything wrong with my eye to explain the vision loss. So i got sent over to an optamalogist and he confirmed that my vision definantly got worse and i wasnt imagining it. But yet no explanation.of why it happened or if it was going to.go away... So i went on.my way kinda frusterated because it was hard to function like it. That specialist sent me for an.mri a couple days after. So i went for that and on the sheet it said they were checking for.ms lesions. By the time i was able to have mri it was almost 2 weeks and my eye got better. I woke up easter morning and my eye was finally back to normal.
The doctor who ordered the mri is gone on vacation now but he called me the night after my mri at 9 in the night! I missed the call however and havent heard anything about it since.
Then a secretary called from a neurologists office with an appt for.me before the end of the.month. i dont know.and ive got.myself worried sick over it.... Can anyone tell me why i would be sent to a neurologist after my mri?? I dnt have my results and no way to find out and 2 more weeks before.my.neuro appt. I am going crazy with anxiety ugh... So just wondering if anyone had any advice.
By the way i am a 29 year old female from northern canada.

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jimmylegs
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Re: Optic neuritis

Post by jimmylegs » Tue May 07, 2019 2:33 pm

hi 'neighbour' ;) and welcome to TiMS

so our darling nation is the ms capital of the world and to some extent the further north, the worse it gets. also i haven't verified but fwiw i get the impression that albertans are hit hardest.

ms is a genetic x environmental combo with european genes x higher northern (and southern hemisphere) latitudes playing major parts, and vitamin d3 status potentially suffering unless replaced via diet and/or supplemental sources.





check out figure two (p. 1650) in this study:
  • 25-Hydroxyvitamin D levels in acute monosymptomatic optic neuritis: relation to clinical severity, paraclinical findings and risk of multiple sclerosis (2015)
    https://bit.ly/2DW3L4f
note that the ON group (lower line) d3 status ranges from around 40 to 70 nmol/l or so over the course of the year.
compare the MS group (upper line) whose levels range from more like 55 to 75 nmol/l over the same time frame.
i note that the lowest levels of the year occur in march.. coincidence re your early april xp? hard to say...
re any links between experience of ON, d3 status and ms risk, the study didn't seem to find much of significance BUT i am not having the easiest time making sense of the write-up either.

at least the graphed ranges compared to healthy d3 goals make a useful contrast. many of us here with a diagnosis of ms and an interest in optimizing vit d3 status for healthy immune function, are aiming for at least 100-150 nmol/l of serum 25(OH)vitaminD3.

if you are not already taking vitamin d3 and a multivitamin / multimineral on a daily basis, and monitoring your vit d3 status, maybe that's something you could consider acting on while you wait for your appointment.

fyi i would not recommend taking vitamin d3 alone, as it can deplete essential cofactor nutrients such as magnesium.
(and in some cases, just taking magnesium alone is enough to boost d3 levels - strange but true).
depleted magnesium could make you feel even more anxiety while you are waiting for your appointment :S no fun!

i hope that is some short term news you can use :D
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!

Jessica200131
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Re: Optic neuritis

Post by Jessica200131 » Tue May 07, 2019 3:08 pm

Thanks , some interesting reads for sure. Well one thing i know for certain is I prob do lack vitamin d ... Its only sunny and warm here for 3 months out of the year if we are lucky. Haha.
I am relieved that my eye is mostly back to normal though.... I hope it doesnt happen again. Now it seems like my eye fogs up sometimes.... Mostly when i am warm. I always ask if my glasses are fogged up and everyone says no but still my right eye is foggy sometimes. Have no idea if its all in my head or my eye really fogs up ... Does this ever happen with optic neuritus

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jimmylegs
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Re: Optic neuritis

Post by jimmylegs » Tue May 07, 2019 3:18 pm

being warm can aggravate nerve damage for sure. my nerve damage is not worst in my eyes... when i am heated up, it can get really hard to walk until i'm cooled down again. no way it's my imagination.
i don't think your similar issue is in your head... other than physically!
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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Scott1
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Re: Optic neuritis

Post by Scott1 » Tue May 07, 2019 11:01 pm

Hi,

As your question is why would you be sent to a neurologist after an MRI (ordered by your GP) then the easiest answer is the GP doesn't feel he is the right person to interpret the result.
An MRI is just a picture. If you saw what the technician wrote on the accompanying report, it would sound like medical gobbledygook. The technician usually gives a first impression and passes that to far more qualified neurologist.

Most GP's, no matter what they say, know zippo about neurology.

It is the right thing to refer any MRI to a qualified person. If they found nothing, then the GP would be clueless. If they found something, then GP would be well outside an area he is trained in. The right person to order the test was probably a neurologist in the first place, not the GP.

I think you're just being referred to the right person to interpret the MRI.

Uncertainty is very unsettling but that is the nature of how these tests go. Don't over interpret the referral.

Regards,

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NHE
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Re: Optic neuritis

Post by NHE » Tue May 07, 2019 11:32 pm

Jessica200131 wrote:
Tue May 07, 2019 3:08 pm
Thanks , some interesting reads for sure. Well one thing i know for certain is I prob do lack vitamin d ... Its only sunny and warm here for 3 months out of the year if we are lucky. Haha.
I am relieved that my eye is mostly back to normal though.... I hope it doesnt happen again. Now it seems like my eye fogs up sometimes.... Mostly when i am warm. I always ask if my glasses are fogged up and everyone says no but still my right eye is foggy sometimes. Have no idea if its all in my head or my eye really fogs up ... Does this ever happen with optic neuritus
Yes, that's normal for optic neuritis (ON). It's exactly what I experienced when I had ON. It took about 5-6 months for my eye to stabilize and no longer fade out when I got warm. Drink something cold when this happens to lower your body temp. Ice water should be fine.

Jessica200131
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Re: Optic neuritis

Post by Jessica200131 » Wed May 08, 2019 12:38 am

Thanks everyone. I read too much into everything. That is just me naturally lol. High anxiety and depressed most of time so i usually think of the worse outcome. From what i understand the optic neuritis can be a one time thing?? I hope so...
And of course i have started thinking about if ive had other symptoms.... I have dealt with dizziness for a long time... I will usually wake up like it and itll stay all day.. I cant do much when it happens only lay down. My head feels foggy too a lot.... But i put that down as depression.

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Re: Optic neuritis

Post by jimmylegs » Wed May 08, 2019 6:38 am

hi again. this stage in the process is really frustrating and scary. nobody else seems to feel the same urgency. it's the worst, i remember it well.

with that said this probably seems like cold comfort, but a normal result would be less than valuable. in the absence of anything definitive, ms or otherwise, you would potentially end up in a longer lasting waiting game, to see if you have another episode or if anything shows up on another mri down the road.

in that case i hope you would not take a normal result as license to continue as if nothing is wrong. normal ranges include both sicker and healthier individuals. your body has given you a signal. i was lucky to get diagnosed quickly when the wheels really came off but i should have been listening to my body for years beforehand. it was trying to tell me something was wrong and i was not listening, having no idea i would end up doing irreversible damage.

when i had my optic episode last year it was my first. it was after a few years of taking better care of my job than myself, followed by a bad infection in february. brain damage was visible on mri. my vit d3 level was 50 nmol/l. it took me two sets of 10 day therapeutic boosts to get it where i wanted. the first round got me to 90 nmol/l. so i did it again. then i was up to 166 nmol/l so i went back to lower level but diligent maintenance supplementing. all that of course with careful attention to d3 cofactors and all the other nutrients essential to health. my eye issues did not resolve on their own - another story.

no problem since except i am more vulnerable to heat than before. guess i needed to be taught my self care lesson twice :S

i hope you will go forward determined to find an action item even if your mri results are normal in the ms department. a serum 25(OH)vitaminD3 test is very likely to be low hanging fruit. knowing your level could help you decide on next steps.

the other thing you might be able to do is request a copy of your mri results. your local health care provider may expect you to pay for the copy. i have been told no in the past and then yes when i said i was prepared to pay for it. since then in other settings i've said i'll pay and then there's been no charge. so it's a mix. if you do get a copy, the disc would probably have one sheet of text interp and then all the scans (might be different where you are but here, patients do not have access to all results online).
nobody here is a pro it will still be the neuro's job to tell you what the mri results mean in any detail. if your peace of mind is worth it while you wait for the appointment, you could give it a try. either way, take good care of yourself!!

fwiw, nutrition is important for mental health as well. anxiety used to be my status quo. it went away for good after dealing with magnesium issues. turned out those had been in the mix since high school. who knew! if you are interested you can boost intakes of magnesium rich foods and consider a magnesium supplement such as magnesium glycinate (which is good for absorption in contrast to magnesium oxide on its own which is more laxative in nature).

ps found this re ON
  • Brain Magnetic Resonance Imaging in Acute Optic Neuritis
    https://jamanetwork.com/journals/jamane ... act/592489
    "Changes in the brain on magnetic resonance images are common in patients with optic neuritis even when there is no other clinical evidence of multiple sclerosis. ...
    Results. ... For patients with isolated (monosymptomatic) optic neuritis, 26.7% had two or more lesions.
    Conclusions. —We found a lower prevalence of brain magnetic resonance imaging abnormalities in isolated optic neuritis than previous studies have reported. This likely is due to our study having a higher degree of standardization of patient inclusion criteria, which limited patient selection bias."
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!

BigDaddy
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Re: Optic neuritis

Post by BigDaddy » Wed May 08, 2019 7:46 am

jimmylegs wrote:
Tue May 07, 2019 2:33 pm
hi 'neighbour' ;) and welcome to TiMS

so our darling nation is the ms capital of the world and to some extent the further north, the worse it gets. also i haven't verified but fwiw i get the impression that albertans are hit hardest.

ms is a genetic x environmental combo with european genes x higher northern (and southern hemisphere) latitudes playing major parts, and vitamin d3 status potentially suffering unless replaced via diet and/or supplemental sources.





check out figure two (p. 1650) in this study:

25-Hydroxyvitamin D levels in acute monosymptomatic optic neuritis: relation to clinical severity, paraclinical findings and risk of multiple sclerosis (2015)
https://bit.ly/2DW3L4f

note that the ON group (lower line) d3 status ranges from around 40 to 70 nmol/l or so over the course of the year.
compare the MS group (upper line) whose levels range from more like 55 to 75 nmol/l over the same time frame.
i note that the lowest levels of the year occur in march.. coincidence re your early april xp? hard to say...
re any links between experience of ON, d3 status and ms risk, the study didn't seem to find much of significance BUT i am not having the easiest time making sense of the write-up either.

at least the graphed ranges compared to healthy d3 goals make a useful contrast. many of us here with a diagnosis of ms and an interest in optimizing vit d3 status for healthy immune function, are aiming for at least 100-150 nmol/l of serum 25(OH)vitaminD3.

if you are not already taking vitamin d3 and a multivitamin / multimineral on a daily basis, and monitoring your vit d3 status, maybe that's something you could consider acting on while you wait for your appointment.

fyi i would not recommend taking vitamin d3 alone, as it can deplete essential cofactor nutrients such as magnesium.
(and in some cases, just taking magnesium alone is enough to boost d3 levels - strange but true).
depleted magnesium could make you feel even more anxiety while you are waiting for your appointment :S no fun!

i hope that is some short term news you can use :D
That map showing MS being so prevalent in the northern hemisphere is incredible! I’m from the UK, which is also a lovely shade of red. I’ve always said I was born in the wrong country as it is, now I really wish I had been born somewhere else!

I lived in Western Australia for a couple of years as a kid, which is an MS free zone by the look of things. I’ve never forgiven my parents for coming back to the UK - now I will never speak to them again. Well, I don’t speak to them anyway, but that’s another story.

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jimmylegs
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Re: Optic neuritis

Post by jimmylegs » Wed May 08, 2019 10:11 am

careful, i'm seeing 'low risk' or at least lower risk, not 'ms free' re western australia. and a couple years' residency is probably not enough to confer protection, even if they took place before the magic age 15.
i'm only one generation out of the uk myself. lucky us lol :S
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!

BigDaddy
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Re: Optic neuritis

Post by BigDaddy » Wed May 08, 2019 10:53 am

jimmylegs wrote:
Wed May 08, 2019 10:11 am
careful, i'm seeing 'low risk' or at least lower risk, not 'ms free' re western australia. and a couple years' residency is probably not enough to confer protection, even if they took place before the magic age 15.
i'm only one generation out of the uk myself. lucky us lol :S
I’m interested to know whether it’s the sunshine/vitamin D that contributes or our proximity to the North Pole?

As much as I wish we’d stayed down under, the last time I visited in 2005, I got bitten by one of their deadly creatures on the bottom of my foot, my leg ballooned to twice its original size and I spent half of my stay in a wheelchair!

Either way, I was clearly born in the wrong country, to the wrong parents and will be treated, eventually, at some point, perhaps, somewhere down the line, maybe, eventually by the good old NHS. God help me.

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jimmylegs
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Re: Optic neuritis

Post by jimmylegs » Wed May 08, 2019 1:20 pm

i think it's just that we get less d3 at the poles unless we make an effort.
yikes sorry to hear you got bitten. worst i had to deal while there with was a good jab from a bull ant.

oh man everything i see from across the pond these days looks like RIP for the NHS :S fingers crossed for ya!
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!

BigDaddy
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Joined: Mon May 06, 2019 3:39 am

Re: Optic neuritis

Post by BigDaddy » Sat May 11, 2019 1:00 am

jimmylegs wrote:
Wed May 08, 2019 1:20 pm
i think it's just that we get less d3 at the poles unless we make an effort.
yikes sorry to hear you got bitten. worst i had to deal while there with was a good jab from a bull ant.

oh man everything i see from across the pond these days looks like RIP for the NHS :S fingers crossed for ya!
Hi again,

I’ve been doing a bit of research this morning into diseases that mimic, or are perhaps linked to, MS.

On the subject of being bitten while in Australia, I’ve made a link. As I say, I was bitten on the bottom of my right foot while I was out there. My leg ballooned, I suffered immense pain and that night I suffered a terrible fever and was sweating like you wouldn’t believe. I saw a doctor a day or so later who gave me some kind of medication, but no blood tests or anything like that.

On returning to the UK, I started suffering from strange headaches and my mental health declined very rapidly. In fact, my general health declined and has continued to do so. I’ve read this morning that Lyme Disease if left untreated, or not treated correctly, can cause infection of the brain and spinal cord and some doctors have suggested a link between this disease and MS.

Does anyone know anything about this? It seems too much of a coincidence to me.

I’ve discussed the headache problems that began at that time with my doctor who confirmed that I was given naproxen after complaining of strange headaches in 2005 or 2006, but I didn’t mention the bite in Australia, as I’ve only made the link this morning. As far as I have always been concerned, the bite was dealt with by a doctor in Australia and that was it. You can see from my previous post that I’ve just laughed it off as as unfortunate event that slightly spoilt a holiday and nothing more. Given how much of an enigma MS seems to be, nothing would surprise me. I don’t even know what I was given by the doctor in Australia and there was no diagnosis or tests as such - he just said I had been bitten by “something” and the poison had caused the fever, which was cleared up by what I assume were antibiotics.

Does anyone else here have a similar story or set of circumstances?

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jimmylegs
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Re: Optic neuritis

Post by jimmylegs » Sat May 11, 2019 2:40 am

hi :)

it's common to need to cast around for a causal link to your personal scenario. i did a lot of that as well. it was this deficiency, that injury, the other vaccine.

at the end of the day, i had some inborn and acquired susceptibilities, maybe all those things i identified were just the final straws that broke a very weakened camel's back. any time i've made mistakes or just gotten lazy on the acquired side of the equation, i pay the price.

it's not super comforting, but even if you found one other person who could say yes i had exactly that experience and i also have ms, it still would not be very authoritative in statistical terms.

personally, i had already been diagnosed by the time i was jabbed in oz!

of possible interest:

Borrelia burgdorferi antibodies in multiple sclerosis patients
https://n.neurology.org/content/39/6/760.short

some important points in:

A Critical Appraisal of “Chronic Lyme Disease”
http://fhs.mcmaster.ca/medicine/infecti ... isease.pdf

keep on reading! the learning curve has always been my fave part of a bad deal :)
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!

BigDaddy
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Re: Optic neuritis

Post by BigDaddy » Sat May 11, 2019 7:25 am

jimmylegs wrote:
Sat May 11, 2019 2:40 am
hi :)

it's common to need to cast around for a causal link to your personal scenario. i did a lot of that as well. it was this deficiency, that injury, the other vaccine.

at the end of the day, i had some inborn and acquired susceptibilities, maybe all those things i identified were just the final straws that broke a very weakened camel's back. any time i've made mistakes or just gotten lazy on the acquired side of the equation, i pay the price.

it's not super comforting, but even if you found one other person who could say yes i had exactly that experience and i also have ms, it still would not be very authoritative in statistical terms.

personally, i had already been diagnosed by the time i was jabbed in oz!

of possible interest:

Borrelia burgdorferi antibodies in multiple sclerosis patients
https://n.neurology.org/content/39/6/760.short

some important points in:

A Critical Appraisal of “Chronic Lyme Disease”
http://fhs.mcmaster.ca/medicine/infecti ... isease.pdf

keep on reading! the learning curve has always been my fave part of a bad deal :)
Thanks for coming back to me.

I know exactly where you’re coming from. In a bid to rid myself of this I’m trying to understand how it works, what might have caused it and whether a probable cause can provide a solution. I don’t suppose for one minute that I am alone in doing this.

I’m still in the hugely frustrating process of diagnosis, so the more facts I can give doctors the more I can, hopefully, help them with both a diagnosis and a treatment plan.

There’s no doubt in my mind that the timing of that bite/fever and the onset of strange symptoms shortly afterwards is something worth looking at. I believe there are specific blood tests that can possibly throw some light on it.

All in all, MS and the numerous diseases that are incredibly similar, seem to be a mystery to everyone. I’ve definitely learnt that much already. Science seems to have a whole lot of theories and labels, but no definitive answers to anything and it does seem to affect different people in different ways - even in terms of how people respond to treatment. Amid all the miracle healings via diet, lifestyle changes and CCVSI, I’ve yet to find any examples of a single person being cured by conventional medicine.

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