Been a while

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
greengirl35
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Re: Been a while

Post by greengirl35 » Thu Sep 06, 2018 7:14 am

Thanks so much for all these suggestions! I will definitely try adjusting the times on supplements, as well as up my veggie intake. I live in New England. As far as the vision, the first time in 2011 it was much more severe, it took months to slowly go back to normal. It was so gradual I remember wondering I I just was getting used to it. 2016 was similar to this occurrence. If I wear a patch on either eye I can see normal. Without it, I can only see things singular if I look all the way to my left, or things that are within a foot or two of me I can still see single. Was hoping after 11 hours of sleep last night I would have some improvement, but alas, still the same. When my head hurts, usually proceeding the double vision, it’s localized right on the inner corner of eyebrow. Sometimes I would have pain in my jawline, and even my neck feels stiff, and I’ve been getting almost pin like pain on and off on my ear, not in my ear, but like the cartilage part. Super weird. I remember the jaw pain being pretty bad last time this happened too, and I do sometimes get random pains in the lower part of my jawline in both sides. So random though, only lasts for seconds. Thanks so much again, really cool you take the time to help people with nutrition and the like. I’m assuming you do this for a living by how knowledgeable you are.

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jimmylegs
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Re: Been a while

Post by jimmylegs » Thu Sep 06, 2018 7:53 am

ha no this is all volunteer and personal interest and a rather bulldoggish personality lol :) (and, sadly, slacking on the things i really *should* be doing right now...)

helpful detail on the state of your vision, including that things are only clear with hard left gaze. me too. i also could see without doubling in the very near distance. also doubling in my hard right gaze was the very last thing to clear up.

my double vision *definitely* occurred after the worst headache i have ever had in my entire life. in hindsight i should have gone to emerg just for that. i couldn't even think straight eg looking up ppls numbers to cancel meetings was beyond me.

it is only my recent xp in front of the ER ophthalmologist, and all the reading that i got done after, that allows me to ask all those questions about nystagmus, gaze, and so forth.
your SO should be able to see what's going on if you're interested in some home eval. after the ER Ophthalmologist said i had this and that i went to my family and asked hey can YOU see this and that and they totally could. they could also see it improving as i worked through my home PT.

if interested: for nystagmus, one eye at a time you move your gaze diagonally from each lower corner to the opposite upper corner. ie on the left, outside lower corner to upper inside corner and back. maybe also lower/inner to outer/upper?. repeat on right side.
whoever you're with looks for smooth vs staggered tracking. if staggered it's nystagmus (could be something else i suppose, but i wouldn't know what).
there are various nutrient deficits that have been associated with nystagmus too.

for INO, you can have someone watch how your eyeballs behave with a hard right and left gazes. do both go right to the corner, or does one not make it quite as far? if they don't match, is it happening on one side or both? if it is indeed INO and not some other thing i've never heard of, the answer tells you if you have unilateral or bilateral internuclear ophthalmoplegia. i suspect from your clear hard left gaze that your case is unilateral.
either way if INO is the conclusion, it gives the doc an idea of the lesion's (or lesions') location(s). for me, they followed up with mri to confirm. all fascinating, if annoying!!!

i have no research handy re INO nutrition but i know where i need my levels to be. around this time i did some long overdue bloodwork and my zinc status was garbage. i took lots for a month and then backed off to a more normal intake since. i am still waiting to ask for a retest requisition.

it makes me think back though to a time i had the closest thing to a visual disturbance prior to INO. i had issues processing visual info especially at speed. it could range from trouble deciding it was ok to cross an intersection, to trouble changing lanes on the highway. i could feel the strain my brain was having, behind my left eye.

around that time and for other reasons i asked for my first ever zinc test. i was deficient. i sorted that out and all my spatial-cognitive issues cleared up. i stopped feeling any strain behind my eye as well.

later i had a brain scan and asked my neuro if what he could see was consistent with what i had felt and experienced, and he said yes. it was the only other time in my life i came close to having my license to drive revoked. overall with that past xp, and most recently INO together with very low zinc, it has made me start to re-examine zinc as important for repair and cognition. i think though, that science has been looking at smaller steps in between those two things, and has not been making the leap from one to the other in any one study. maybe one day!
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!

greengirl35
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Re: Been a while

Post by greengirl35 » Thu Sep 06, 2018 9:14 am

Well it’s great that you have a personal interest like this, I’m sure it is a huge benefit to your personal well being. And I really appreciate all this input so much :-D . Definitely gonna have the hubs check out my eyes when he gets home tonight. I’ve had brief episodes of nystagmus randomly from time to time, everything wiggles side to side for like a minute, then I get a brief touch of vertigo. I can totally relate to the worst headache of your life feeling. When it brought me to the ER in 2016, I had let all the OTC meds ware off completely so I could describe my pain fully. They really only dulled the pain enough that I could sit still with an ice pack on my head without writhing in pain. It was unbearable. They asked me to describe the pain level and I told them I would prefer to have my children over again. I think they got the point lol. This time it never got that bad thankfully. I incorporate zinc in my supplements usually during cold/flu season, maybe I should just take it all the time. I really want to have my general doc run some labs next time I see her anyway, I’m waaayy overdue for my physical anyway. Maybe I will try and see an ophthalmologist tomorrow if I’m still this way. Last time I saw one it was after my vision was better, that was the soonest I could get them, and they said everything was good. I also had VEP that came back normal. But again, not during episode. Not sure it would matter.

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jimmylegs
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Re: Been a while

Post by jimmylegs » Thu Sep 06, 2018 9:44 am

oh that is crazy i always wondered what that kind of nystagmus would feel like for the patient. i only had the staggered tracking. would never have known anything about it if not for trip to emerg that time.
ugh 'scale of 1 to 10?' 'TWENTY-FIVE!!!'
so glad you are not dealing with intense pain to go with your fun (potential) INO excursion this time around

zinc is not something to throw around lightly - i skipped a lot of detail but it's all posted elsewhere and i can link you up to that later.

i think it would be awesome if you could request some atypical bloodwork, and also get in to see an ophthalmologist asap. i don't know how things work where you are, but for me the emergency room was going to be the only way i would get evaluated by a specialist right away. i still tried to second-guess my doc's ER advice but when i looked into it, clearly a regular appointment would not have happened soon enough.

i will be interested to hear the results of your consult with the hubby! :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!

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jimmylegs
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Re: Been a while

Post by jimmylegs » Fri Sep 07, 2018 7:20 am

hi again gg, if you haven't seen already and if you've determined it may be relevant, this link drops you into some 'good bits' from recent ophthalmoplegia chats i've been having w another TiMS member:
http://www.thisisms.com/forum/introduct ... ml#p254634
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!

greengirl35
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Re: Been a while

Post by greengirl35 » Fri Sep 07, 2018 1:12 pm

Hi there, so I took your advice and went to the ophthalmologist today, they were able to squeeze me in. They didn’t see anything that they could pinpoint would be causing my double vision. He said by the way that I was moving my eyes when he would have me focus on object and he would cover each eye at a time, he could tell I was seeing double, but couldn’t establish reasons why. Doesn’t see obvious INO, and my actual vision is pretty good. Kinda makes me feel like I’m going nuts, but happy they didn’t see anything serious. It’s a weird place to be when you get test results that are good, but why am I feeling this way. I asked him if he thought migraine could cause it, he said yes, though he’s never seen anyone have it last as long as mine, especially factoring in the previous episodes. They called to schedule my LP, going next Friday, so I guess time will tell. All I can do is take care of myself and know that I’m doing what I can on my end.

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jimmylegs
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Re: Been a while

Post by jimmylegs » Fri Sep 07, 2018 1:50 pm

ok well i am glad that it's not clear evidence of brain damage! even if it is still an annoying question mark.
i wonder if the physio info i found for INO could help you, even if it's not your official dx. if you are interested in trying it out, i posted that link above which i think includes enough detail to go ahead with solo physio. it's nothing more difficult than covering one eye and nodding a bunch of times lol
one other question - i'm curious if you feel muscular tension around one or both eyes?

i went looking for some other possible causes of diplopia and read this with interest
http://www.cos-sco.ca/vision-health-inf ... le-vision/

all kinds of ways to address the various things decribed at that page.
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!

greengirl35
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Re: Been a while

Post by greengirl35 » Fri Sep 07, 2018 3:13 pm

Yes, definitely happy it’s not that either haha! I will check out that physio stuff for sure, I’ve been couch surfing a little too much last couple of days and need something to do! I do sometimes feel tension around the eye, sometimes in the eyebrow, and jaw. Even the space between the inner corner of my eye and the bridge of my nose sometimes. I was telling the ophthalmologist that today because they would ask if it was hurting when I would move my eye, and it didn’t, wouldn’t even call it discomfort, but like the muscles were tense. I try so hard to fully relax my face and jaw to see if it helps. I always am amazed how much tension us humans can hold in our face! I always try to bring that awareness to my clients too. Gonna check out some of these links now :-D

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jimmylegs
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Re: Been a while

Post by jimmylegs » Fri Sep 07, 2018 3:41 pm

awesome. obviously, i can get into the full text of that physio regimen paper if you are interested in more info. sadly i'm not able to grab images from it though, since i don't have anywhere i can readily host online and then link to posts here in the forum. just lucked out finding that one related powerpoint slide.

from the general diplopia page, i read this bit with interest:

"Microvascular cranial nerve palsy, or “diabetic palsy,” is one of the most common causes of double vision in older people. It occurs more often in patients with diabetes and high blood pressure, when blood flow is blocked to one or more of the six eye muscles that control eye movement"

not to say that you're older per se but palsy, diabetes and hypertension all point to magnesium status to my eye (ugh no pun intended!). then:

"Myasthenia gravis is a disorder characterized by muscle weakness, caused by a communication breakdown between the nerves and the muscles due to an autoimmune condition."

there's an old protocol with some issues and some merit which was designed for mg and which has been used to good effect in ms also. it was an amazing help in my case! that said, there are so many different ingredients in the mix that it's impossible to say which individual elements or combinations are having the effect. it would take a very very very very long time to isolate all possible combinations and study each separately!! at the end of the day i'm content with it being a mystery. as a lump sum, it helped. a LOT!

i think from your description of the muscle tension that you may very well benefit from the physio. if you can feel the physio stretching just where the muscles are tense, that will be a good sign. other than that, i am thinking of general stuff to help with muscle spasticity. that brings us full back around to magnesium. i wonder, given that extra mag is not necessarily ideal, whether a break from d3 could be useful, to let your body at all of the supplemental mag for a while.
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!

greengirl35
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Re: Been a while

Post by greengirl35 » Sat Sep 08, 2018 5:51 am

Yes, anything that will help at this point I’m willing to try, really want to get back to normal activities that this double vision is disrupting. As far as MG, I know my doctor specializes in MG, and it was one of the first things he ruled out from what I understand. The diabetic nerve palsy is definitely of interest. I know my A1C is always great, but my mother is diabetic and her father was so it’s always something that I have in the back of my mind. I’m 36, but still never know. Blood pressure is the one thing I’ve never had a high on, except the first time I went to ER with double vision in 2011, but I think it was through the roof because of the car ride there. I kept thinking cars were gonna hit us lol. Then I just closed my eyes, but my anxiety was through the roof by the time we got there because I had never experienced that before, plus I think I thought I was having a stroke. Got me in quick anyway, but stabilized pretty quickly. This is all great info though to keep in mind. I was in a bike accident when I was 10, fractured my skull in two spots, one of which (drumroll please) right over my left eye. I always wonder if this has something to do with this. Granted these symptoms popped up much later in life, but can’t help but wonder. I’ve informed my docs about it, the seemed uninterested lol. Maybe if that was a cause they would see something on my MRI, interesting nonetheless. Maybe I will take a little D3 break for a few days, see if that helps. You have great suggestions, thanks for taking the time to chat with me. Much appreciated! :-D

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jimmylegs
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Re: Been a while

Post by jimmylegs » Sat Sep 08, 2018 5:59 am

hi i am short on time at the moment but these three posts should get you started on home PT :) (they are all on the same page so the first link will get you to all)

http://www.thisisms.com/forum/introduct ... ml#p254634

http://www.thisisms.com/forum/introduct ... ml#p254637

http://www.thisisms.com/forum/introduct ... ml#p254670
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!

ElliotB
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Re: Been a while

Post by ElliotB » Sat Sep 08, 2018 8:22 am

Doctor Google can help you locate illnesses that mimic the symptoms of MS. Here is a link to one such article titled "8 Conditions That Mimic Multiple Sclerosis"

https://healthguides.healthgrades.com/y ... -sclerosis



Here is another titled "Do I Have Multiple Sclerosis or Another Disease?":

https://www.verywellhealth.com/diseases ... is-4107533


There are many, many, many other similar links.


Treatment is basically the same for all of these as in general there are no pharmaceutical cures, with the ultimate goal to reduce inflammation in the body through diet/nutrition (proper foods and nutritional supplements), exercise, stress elimination, plenty of quality sleep.


Hope you are feeling better soon...

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jimmylegs
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Re: Been a while

Post by jimmylegs » Sun Sep 09, 2018 10:27 am

hi gg what needed to happen after the skull fractures? i'm reading this golden oldie atm, not sure the degree to which info might be either applicable, or transferable... interesting array of case studies, term 'diplopia' occurs 24x

Long-term sequelae after surgery for orbital floor fractures (1999)
https://pdfs.semanticscholar.org/7c99/4 ... d1446b.pdf

A surgical technique involving exact repositioning and rigid fixation is required for the reduction of fractures of the orbital floor. Even then, sequelae may be present long after the trauma. The aim of this study was to establish the frequency and type of sequelae after surgery for orbital floor fractures and to investigate the extent to which the method of surgery had any impact on the severity of the sequelae. A questionnaire was sent to all 107 patients (response rate 77%) 1 to 5 years after the injury. Further clinical data were obtained from the patients’ charts. Eighty-three percent of the patients were affected by some kind of permanent sequelae in terms of sensibility, vision,
and/or physical appearance. A high frequency of diplopia (36%) was related to the reconstruction of the orbital floor with a temporary “supporting” antral packing in the maxillary sinus, a technique which has now been abandoned at our department in favor of orbital restoration with sheets of porous polyethylene.
Our conclusion is that, because long-term sequelae are common, the surgical technique must be subjected to continuous quality control to minimize future problems for this group of patients.
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!

greengirl35
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Re: Been a while

Post by greengirl35 » Mon Sep 10, 2018 12:53 pm

Hi Jimmylegs, so there was no surgical procedures involved in my case, luckily. I remember them telling my dad they may need to fly me to Boston for surgery, because I remember the look on his face lol. But ultimately they said it wasn’t necessary. I just had to take it very easy for what seemed like an eternity for a 10 year old on summer vacation. I’ve always wondered if it has some connection though. Definitely will give this a read! I bookmarked those links so I can try out some of these eye exercises, couldn’t get on to the website for some reason the last day or so, took forever to load. Vision hasn’t changed much over the weekend except maybe tiny improvements, very hard to tell, could just be wishful thinking. Slept a ton over the last few days, can’t seem to get enough, so I was hoping that would incur more positive change.

Thanks for the links ElliotB, I have read about lots of MS mimics for sure, I know this neuro I’ve been seeing the past 2 years has ruled out many, but I’m aware there are plenty more to explore. In fact after LP Friday, well after the results, I plan on asking my GP to run some specific Thyroid tests because I find a lot of my symptoms, especially the newer ones like the trembling and heat sensitivity, could be related to that as well. And I know my neuro ran thyroid labs, but probably just the basics. I had a positive ANA twice, but very low titer, so he ran more specific antibody tests for that and felt comfortable ruling out lupus. Again, the titer is tricky, my daughter had the lowest titer possible, many docs would call it a negative, but she has an autoimmune condition, so doesn’t necessarily mean anything. I’m certainly not sold that it’s MS, and neither is neuro, just seems like several things point in that direction so he’s running test to rule it in or out. I know ms doesn’t necessarily work like that, but if brain MRI hasn’t changed in 7 years and my CSF isn’t suggestive, I will probably feel better putting MS on the shelf. I will get second opinion if I am skeptical of anything as I’ve never had the full spine MRI, but I would think something would change on brain, and/or show on LP if it was MS. It’s hard to be patient when your dealing with symptoms, but once I feel better I usually don’t push for tests etc because I just want to live my life and raise my kids, but I am going to try to stay on it and find an answer if there is one anyway. Don’t want this to keep happening, especially if it happens more frequently. You guys are very helpful, I’ll keep you posted, and jimmy I’ll let you know how that physio stuff works out!

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jimmylegs
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Re: Been a while

Post by jimmylegs » Tue Sep 11, 2018 3:04 pm

heya! glad you did not have to have surgery along with everything else :S

any luck yet getting around to testing out the PT stuff?
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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