Optic Neuritis or Ocular Migraine?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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ebrownkirkland
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Optic Neuritis or Ocular Migraine?

Post by ebrownkirkland »

So... I know that I'm just torturing myself by continuing to search the Internet before my husband has his VEP test, but I'd love to have someone weigh in on these "migraines" he's been having that first sent him to a neurologist.

Here's what's been going on. About two years ago, my husband began having migraines. These coincided with a new, very demanding job that he'd gotten, and so he chalked them up to stress. Fast forward to about two months ago when he began having visual symptoms. Basically, he couldn't see out of his right eye. He said it didn't hurt at all -- he just could only see a big black spot when he looked out of that eye only. This symptom came and went hour to hour over the course of a couple of days. And, two months after the symptoms began, I made him an appointment with a neurologist so he could get help for what we assumed (and what the original neurologist he saw assumed) were ocular migraines.

The neurologist sent him for an MRI without contrast and three lesions were found -- one of which was one centimeter. Out of concern for possible MS (and out of an abundance of caution) he was sent to have a host of lab work done, including a lumbar puncture. When the results of the LP came back he was found to have only one o-band, high protein (his level was 89; normal is 15-45), and elevated albumin. The neurologist then ordered a second MRI, this time with contrast, and the second MRI showed evidence of "Dawson's Fingers." Mainly because of this finding, the neurologist advised him to see a neurologist who specializes in the treatment of MS, and he had his appointment with this neurologist on Wednesday, Jan. 25.

The MS specialist called the findings on his MRI "concerning," but told him that his visual symptoms won't necessarily characteristic of optic neuritis. However, he still scheduled him for a VEP test, and that test is set for Feb. 8. If the results of that test come back abnormal, my husband will be diagnosed with MS (RRMS, more than likely). Until that time, and if the test results from the VEP test come back normal, he will keep his current diagnosis of radiologically isolated syndrome and have MRIs run every six months, beginning this coming July (unless another symptom crops up, in which case he will likely be diagnosed with MS at that point in time). (Obviously if future MRIs show new lesions, he would also be given a diagnosis of MS.)

Anyway, my question is, is what my husband experienced characteristic of optic neuritis? The MS specialist actually wrote down in my husband's chart "optic neuritis," but that may have been because they needed that diagnosis in order for insurance to cover the cost of the VEP test. I guess what I'm wondering is what the odds are that the results of that test will come back abnormal, based on his MRI and other tests he's had run? So far, all other disorders and diseases that mimic MS have been ruled out, although he does have some bloodwork that is still out.

Thanks in advance for any insight you can offer.
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jimmylegs
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Re: Optic Neuritis or Ocular Migraine?

Post by jimmylegs »

hi again :) i can't comment on what the docs will or will not think based on info that is not available. all i can say is, to my knowledge i have never had optic neuritis. as far as my neuro was concerned, my eyes at dx were the anomaly. i was diagnosed anyway.

and yes the two year time frame and the migraines... the start of the migraines. user 'cheerleader' used to have migraines, perhaps she'll chime in with her approach. oh wait i found her list, wow that was quite a dive into the archives (have to scroll past all the drugs being discussed hehe) http://www.thisisms.com/forum/general-d ... tml#p50162

personally, i have only had two painful migraines separated by decades, and then within the last decade a couple of minor visual ones. for the second last, i realized i had been slacking off a bit, high dosed my supplements for a few days, especially magnesium, and things cleared up. for the last one, it was just magnesium i realized could have been off so just increased that in relation to other stuff, and again it cleared up.

having landed myself with a dx originally after inadvertently starving my nervous system for over 15 yrs, now my regular routine is to get as much nutrient dense dietary variety as i reasonably can, and top up with supplements. health focus and emphasis all the way.

at breakfast during the week, i have whole grains (steel cut oats) and mixed berries and cherries (low on blueberries now, but loads of all the rest put down this past summer), on weekends eggs and veggies sometimes with bacon,
various homemade soups or chilis for lunches (it's winter here atm so)
snacks are veggies either with hummous or some cheese, and when i get motivated i'll be back into sprouting seeds in a mason jar on the window sill. other snacks, mixed nuts w chocolate covered gojis (not that those last are a staple actually, holy crap those are like gold so expensive), today's will be apple w peanut butter.
for dinners it's a rotation of red meat, poultry, seafood and vegetarian. organ meats are great for nutrient density - took a deep breath this week and faked a haggis in honour of robbie burns day. no stomach in the recipe (whew!) and the rest looked doable. no heart available though. heartless haggis.
for veg, dark leafy greens are a staple, recently saw a guideline suggesting 1.5c cooked greens 3x per week. having just used up the last of the greens i put down myself last summer, i stocked up on 6 boxes of frozen chopped spinach which i will cut up into cubes and drop them into all the soups, sauces, etc. i also work to mix any potato with sweet potato or other root veg. chopped greens work surprising well in mash too.
this time of year especially, loads of onions, mushrooms, cabbage, carrots, beets, last month i could even still get local kale.

as for supplements, i would say the high quality multivit/multimineral, fish oil, cod liver oil for extra a and d, and magnesium glycinate are the ones that go in closest to daily.
multiple times each week, also zinc citrate balanced w copper, selenium (or sub brazil nuts), b50 complex and E8 complex
i have insane high potency vit d in the fridge in case i feel like a boost is in order, also floravit liquid iron BUT haven't felt like i needed an iron touch up in months.

i would say my worst crime day to day is either not enough plain water (the new filter adds minerals, pretty cool), or not spreading my meals out enough. for instance right now it is 10am and i am still cruising on first coffee. bad. also not exercising enough. that will change as soon as i get past this next little hurdle!

not anything to do with what you asked :S but some may be of interest regardless. ok back to work for me :)
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lyndacarol
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Re: Optic Neuritis or Ocular Migraine?

Post by lyndacarol »

ebrownkirkland wrote:The MS specialist called the findings on his MRI "concerning," but told him that his visual symptoms won't necessarily characteristic of optic neuritis. However, he still scheduled him for a VEP test, and that test is set for Feb. 8. If the results of that test come back abnormal, my husband will be diagnosed with MS (RRMS, more than likely). Until that time, and if the test results from the VEP test come back normal, he will keep his current diagnosis of radiologically isolated syndrome and have MRIs run every six months, beginning this coming July (unless another symptom crops up, in which case he will likely be diagnosed with MS at that point in time). (Obviously if future MRIs show new lesions, he would also be given a diagnosis of MS.)
If optic neuritis is in the picture, it may be especially important to test and know your husband's vitamin D level:

Preventive effect of vitamin D3 supplementation on conversion of optic neuritis to clinically definite multiple sclerosis: a double-blind, randomized, placebo-controlled pilot clinical trial. (2013)
http://www.ncbi.nlm.nih.gov/pubmed/23250818

Multiple sclerosis (MS) presents with optic neuritis (ON) in 20 % of cases and 50 % of ON patients develop MS within 15 years. In this study, we evaluated the preventive effects of vitamin D3 administration on the conversion of ON to MS (primary outcome) and on the MRI lesions (secondary outcome) of ON patients with low serum 25 (OH) D levels. Thirty ON patients (15 in each of 2 groups, aged 20-40 years) with serum 25 (OH) D levels of less than 30 ng/ml were enrolled in a double blind, randomized, parallel-group trial. The treatment group (cases) received 50,000 IU of vitamin D3 weekly for 12 months and the control group (controls) received a placebo weekly for 12 months. Finally, the subsequent relapse rate and changes in MRI plaques were compared between the two groups. Risk reduction was 68.4 % for the primary outcome in the treatment group (relative risk = 0.316, p = 0.007). After 12 months, patients in the treatment group had a significantly lower incidence rate of cortical, juxtacortical, corpus callosal, new T2, new gadolinium-enhancing lesions and black holes. The mean number of total plaques showed a marginally significant decrease in the group receiving vitamin D3 supplementation as compared with the placebo group (p = 0.092). Administration of vitamin D3 supplements to ON patients with low serum vitamin 25 (OH) D levels may delay the onset of a second clinical attack and the subsequent conversion to MS.
ebrownkirkland
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Re: Optic Neuritis or Ocular Migraine?

Post by ebrownkirkland »

jimmylegs, what symptoms and test results eventually landed you a diagnosis?
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jimmylegs
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Re: Optic Neuritis or Ocular Migraine?

Post by jimmylegs »

hey there, i had spinal lesions, brain lesions including the dreaded dawson fingers, all the bad stuff in the LP ie too many o-bands in spinal fluid, elevated proteins etc, lhermitte's sign, bad visual evoked potentials, bad nerve conductivity tests, ataxia, ms 'hug', shortness of breath, and b12 300 pmol/L (was supplementing like crazy by that point however). i told the neuros i was too scared to wash out, to let them get a clean read on background b12 levels. said 'talk to my doc'. turned out doc's computer system had a glitch so they didn't pick up on the actual 'no b12 detected' result i had from the one time i had actually done a clean test prior to dx. i think my status quo back then is what you would call intentional cognitive bias ;) i only wanted facts that supported my conviction that being vegan was the best thing. it was early days in my science education :S lol.
eventually i would discover i also had typical average ms uric acid levels, but that is not mainstream stuff.
no optic neuritis.
never went on any meds just a huge lifestyle change. best short term improvement was three days into a super dense nutritional protocol high in protein, b vits, vit e and selected minerals. made perfect sense in terms of a 180 on my prior vegan tendencies. that's when i got my body back.
second best turnaround was when i figured out the chronic zinc issue. that's when my brain really came back to me.
third best was after i figured out magnesium imbalances (first too little, then too much), and that's when stopped being worried i was going to die. i guess it's been quite a few years now that i've been on track with everything.
that's a lot of years encompassed in a few sentences! still have some sensory loss 11 years in (omg it's my anniversary this week!), but i don't have relapses and have no regrets to date.
hahaha this time in 2006 i was FREAKING OUT and cancelling my overseas exchange. didn't end up being able to make it to australia until july. i was still paying people to wash my hair for me then LOL crazy.
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