Visual disturbances undiagnosed

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Visual disturbances undiagnosed

Postby stephert » Fri Mar 03, 2017 11:08 am

Hi everybody (I just joined), I wanted to see if anyone had any advice on what I should do now? Or if anyone has heard of my medical situation because I can't seem to find anyone online that has dealt with this. Warning: This is going to be fairly long.

So initially I noticed my vision wasn't "right" one day completely out of the blue in summer 2011. By that I mean it seemed hard to focus on the words I was reading and I had very decreased reading comprehension. At that time I was currently enrolled in graduate school having finished 1 of 4 years. For the next two years (2012-2013) I pushed myself through school studying two to three times more to compensate for my lowered reading comprehension while barely passing my classes. During those two years I saw an optician (didn't find anything wrong), opthamologist (thought it was convergence insufficiency and referred me to orthoptic), and a orthopic (who told me it wasn't convergence insufficiency and spend a whole year having me test out differing glasses strengths because she thought vision therapy wouldn't help) who couldn't figure out my problem. In 2013, I had to take medical leave from my program with only one year remaining because of my vision issues. Also, I have OCD about specifically vision issues (manifested itself freshman year of college before vision problems) so when my vision is difficult to read with I'm constantly bombarded with anxious feelings. In 2014 I worked with a qualified opthamologist who tried to help but couldn't. I also attempted to return to school in spring 2015, but I got very sick and had bell's palsy during the semester. A week after bell's palsy subsided I started experiencing my vision fluctuating involuntarily from clear to blurry and back and forth every 30 seconds or so continuously all day every day since then. I have a pressure that builds up behind my eyes that happens right before my vision blurs and then alleviates right before my vision returns to clear. In 2015, I was referred to a vision therapist who tried treating me for dry eyes (didn't help) and then had me do vision therapy. At this point I actually started seeing definite improvement until early 2016 when essentially all my improvement disappeared one day reverting back to blurry clear fluctuations. At that point I saw my primary doctor who had me do a MRI. After that I was diagnosed with relapsing-remitting MS and referred to an neuro-opthamologist. When I saw him I was only suggested treatment for dry eyes. So I'm at a loss for what to do now. I was hoping that since my MS diagnosis it would be clear what my vision issues are. I know there are a lot of different visual disturbances caused by MS lesions on specific parts of the brain/nerves. But I'm just not sure who else to ask. I just want to know if they can diagnose me or if they don't know. It's fine if they don't know because i get that MS is very complicated. But I just want a definite answer about my situation so I can move on with my life. I've been on leave since 2013 and the school has been more than lenient. However, I just got married and need to pursue a career (working as a security guard now since there's no reading) whether I can read well or not. But the doctors just don't seem willing to either diagnose me and treat me or tell me they do not have any solution. Instead I'm given try this and that (even though I've already tried certain things they're telling me to try such as treatment for dry eyes). I'm just looking for advice. Has anyone heard of a ms related problem like mine? I'm assuming it's MS related because if not I should have been diagnosed by now. My tests always come back normal with 20-20 vision and no optic nerve damage. Also, what would you guys suggest I do next? I really don't know at this point. I messaged a couple doctors asking their opinions.
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Re: Visual disturbances undiagnosed

Postby jimmylegs » Fri Mar 03, 2017 11:15 am

hi and welcome :)

have any docs referred you to a nutritionist to make sure all your basic essential requirements are being met? your mention of ocd and anxiety issues plus bell's palsy over and above the visual/cognitive problems together suggest some background work may be in order.

i used to have cognitive / visual comprehension issues. esp when driving - could physically feel my brain struggling somewhere behind my left eye. no issues now.
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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Re: Visual disturbances undiagnosed

Postby stephert » Sat Mar 04, 2017 5:48 am

My MS doctor has not referred me to see a nutritionist. Is that usually covered by insurance? I did have some normal blood tests done with vitamin B levels and things, but I have not seen a nutritionist. Maybe I'll ask him to refer me to one if it's helpful. Thanks!
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Re: Visual disturbances undiagnosed

Postby jimmylegs » Sat Mar 04, 2017 6:25 am

hi i personally have been covered for a certain amount of that kind of help per year, at times when i had the plan provided to full time students at my academic institution. now under general govt insurance, i am not sure a nutritionist would be covered.

if they are covered under your plan, great. if not, this is a process you can easily take on independently. all the daily essential nutrient info is readily available. the only piece missing is the detailed info on your day to day habits. to address that info gap you can just track all your total food and fluid intakes for three days, including info on serving sizes if you can. two days that represent typical 'at work' days, one typical 'at home' day. even better if you track activity levels. important to include any meds used regularly also.

once you have that info, you can then just pick one essential nutrient and go through each day to see if you likely met or exceeded daily requirements.

in your case with the visual cognitive concerns, and this is only going by personal experience with some tangential support in the literature, i would suggest you zero in on zinc first.

i should add that although i have an ms dx and have successfully addressed visual cognitive issues, when i do that kind of thing my docs usually learn about the process from me. when i decided from reading that zinc could be an issue, i asked for the test, doc said ok, and what do you know, i was deficient. doc never would have ordered that test for me.
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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Re: Visual disturbances undiagnosed

Postby jimmylegs » Sat Mar 04, 2017 7:35 am

can you share the findings from the standard bloodwork related to essential nutrients to date? you mentioned. b vits i am assuming that would be b12 at a minimum. did they also run d3? any other nutrient tests? results and gaps can be telling there.
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: Visual disturbances undiagnosed

Postby stephert » Thu Mar 09, 2017 6:29 am

So my B12 levels were 583 pg/ml and the normal range is123-730. The only other blood tests done were for liver function and complete blood count. Would it be helpful possibly to get additional testing? If so would you recommend I see a nutritionist first?
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Re: Visual disturbances undiagnosed

Postby jimmylegs » Thu Mar 09, 2017 7:31 am

re b12, 583 is good; 500-950 is the sweet spot from what i have read to date.

aside: 123 is garbage. someone fed that system that number.. wonder how many people going through that lab with levels in the 120s and what the long term consequences might be :(

that said i don't personally have my hands on a stack of science in support of that 500 number as a lower cutoff. related cognitive study (in older folks though): http://bit.ly/2mEYjLm "The literature is inadequate to define a level for vitamin B12." i have more confidence in 950 as a reasonable cutoff for the upper end of a b12 optimal range.

i think in your case the problems with nutrient testing would be tough to work through. if you have the means and access to just order your own bloodwork via life extension or similar, and chat about results here, that's great. if not, you can just start simple and track your food for three days. 2 days at school or work, one day when at home. this is something you could expect a nutritionist to ask you to do. if you care to share we can review here. example (which goes indepth on mag not zinc but gives an idea of the process) post246375.html#p246375 (skip down to the line that starts 're food'
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!
User avatar
jimmylegs
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Posts: 11767
Joined: Sat Mar 11, 2006 3:00 pm


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