How to cope with stress of waiting for a diagnosis (Binocular Diplopia)

July 25, 2017 12:06 AM

My 18 year old son started having double vision while driving today. Within a few hours, he saw an Urgent Care Doctor, a Neuro-Ophthalmologist, and had blood drawn. We are waiting for the blood test results, but they also want to do an MRI, and evidently those can take weeks to a month + to get an appointment for. Other than the vision problems, he is doing ok, but I am going crazy worrying about the possible causes and am terrified of the worst case outcomes. How do you cope in this situation, and does anyone have any first hand experience with this situation and have positive results to share?

I am not normally a worrier, but this is my son and I have always been able to help him before, and now I feel helpless. My wife was with him at the doctors, and it sounds like the ophthalmologist did not share any specific thoughts on potential causes or corrective actions. I believe it is binocular diplopia, because if he looks out of either eye individually he can see ok. His vision is also mostly normal when looking at something close to his face. In the meantime, the ophthalmologist suggested that he wear glasses with one side covered or an eye patch. It does not sound like something that the ophthalmologist expects to go away on its own, and he is trying to determine the underlying cause.

My wife brought my son back to his University this afternoon (where he was headed when he started seeing double), about 2 hours from our house. He is in the middle of a heavy summer course load. I just spoke with him and he is doing ok under the circumstances, but has had no change in vision. I told him to let us know right away if anything changes with his vision, if he gets headaches, or nauseous, etc. So far the only symptom is the double vision.

He seems to be doing ok, but I am very worried and am having a hard time not knowing what is going on. I probably shouldn’t have started doing research on the internet. There are all sorts of possible terrible causes, and I can not find any that are temporary or low risk. I thought it might be stress related or an anxiety issue, but he shows no significant signs of stress or anxiety and I didn't even see anything indicating these as possible causes when I looked online.

I know that there are a lot of people with worse problems than us, but I feel completely helpless right now. My wife says that she is not going to worry about it without seeing test results, but it is the waiting and not knowing that is making it so hard for me. It is like I have already gotten bad news, because I am so scared that it may be coming. I do not know how I am going to be able to function for the upcoming weeks while we wait for more testing and results.

Also, I assume that it is ok for my son to be at school and doing work, but I am not even sure about that. It was ok with the ophthalmologist, my son seems to be doing ok, and it make sense if everything turns out ok, but if we get bad results later, I am going to feel terrible about sending him back to school.

I apologize for the rambling question. My mind is just not right at this time. I guess in summary I am looking for suggestions on coping mechanisms from anyone who has been through a similar situation - how did you carry on with your work and your everyday life while waiting for possible terrible news - and for any specific examples of people who have had binocular diplopia and had it turn out to be nothing too serious or had it go away on its own.

Thank you in advance for your help.

posted by anonymous to Health & Fitness (11 answers total)

Hi, since you ask for examples of "people who have had binocular diplopia and had it turn out to be nothing too serious or had it go away on its own," my husband had this, and I was terrified as you are ... but in his case it was apparently a specific vitamin deficiency and went away with treatment for that. Wishing the very best outcome for your son, and sending a hug to you.
posted by taz at 12:31 AM on July 25, 2017

I had to deal with not knowing if my kid was alive or dead, and still go to work as a waitress, smiling and being cheerful, when all I wanted to do was crawl into bed and moan. To be honest, what got me through it was Sam E.

It doesn't work for everyone, but it seems to work for most people. It's usually sold in doses of 200mg or 400mg. Try to get a box of 200mg, or cut 400mg in half. If you don't notice that you feel better in an hour or so, take the 400mg dose.

Of course, the amount you need will depend on your weight, etc., and apparently much higher doses are safe, but I never needed it. YMMV, of course. If you have to cut them in half, I suggest taking them with food so they don't irritate your stomach.

It is not addictive, but your body adapts to it over time, so it's recommended that you take a break after two weeks, rather than keep upping the dosage. Also, you should take B vitamins and folic acid, as well. If you don't, you could experience depression when you stop taking it. And of course, watch out for interactions.

If you're in the US, most drug stores, Target, Costco, etc., sell it. Although you probably won't need the huge quantities Costco sells it in. I've always paid about $1/pill; the one time I found a cheaper brand, it didn't work.

Ugh, it's terrible when something happens to your kid and you're powerless to do anything about it. But make sure you take care of yourself, too.
posted by MexicanYenta at 1:57 AM on July 25, 2017

I have exactly this, right now - my diplopia started about 10 days ago, seemingly triggered by a series of other infections brought on by a bad flu. I was whisked off for a brain MRI and blood tests on the same day I saw my doctor, and I've got more specialist appointments this week.

My opthamologist prescribed an anti-inflammatory, and has also told me to take selenium supplements for 6 months. The anti-inflammatory started improving my vision pretty much straight away. I've also found an eyepatch helpful, also resting my eyes (e.g. don't read too much, not too much screen time).

My advice would be to remember that the tests are to rule things OUT - my doctor sent me for a brain MRI straight away to rule out a brain tumour, while noting that it was very unlikely because I didn't have any other symptoms that suggested it. Similarly I had a thyroid scan yesterday to rule out Grave's disease, even though I don't seem to have any other symptoms of Grave's disease. It sounds similar with your son: there are no other symptoms, but doctors need to cover their butts, so they are requesting tests to rule OUT bad things, not confirm them.

I do wish you the best - and as my doctor said to me, don't hesitate to go to the emergency department if any other symptoms turn up.
posted by girlgenius at 3:43 AM on July 25, 2017

I'm sorry your family is going through this. I have PLENTY of experience dealing with terror about my own health while I waited and waited and waited for doctors to do their damn tests, but not nearly as much experience dealing with worrying about the illnesses of my loved ones. My coping strategies for dealing with my own health worries involve self-indulgent distractions like Youtube videos, Netflix, video games and sex. There's also exercise. Any of those things are worth trying! If you have some hobbies that help you zone out, get busy.

A while back I was REALLY freaking out over a terrifying health thing and my doctor prescribed Lexapro. It helped! I still take it. It blunts the shrieking horrors of life by maybe... 20%? Enough that you can still feel quite shitty sometimes, but you feel noticeably less shitty.

As an outsider, I have a hunch the doctors will eventually get to the bottom of this and your son's vision will be corrected. That seems the likeliest outcome. If somebody was telling you this story, maybe you'd see it like that too. Do what you can to see this like that now. As scary as this all feels now, odds are it will get sorted out.

If your son can cope with this emotionally and he can see OK using an eyepatch, this experience may well be harder on you than it is on him! Be proud of how strong he's being right now, and try to find some strength in that. Your worry is activating some primal need to protect him, and that's so sweet but you haven't raised a helpless little baby. You've raised a strong young man who seems to be plugging along. Let him know you're ready to help however you can, but try not to make your worry something he has to worry about.
posted by Ursula Hitler at 3:48 AM on July 25, 2017

I can't imagine how terrifying this is for you. The question is, how do you cope while waiting for the MRI and its results? I'm not sure if you're not in the US which means that there are different rules around waiting for tests. But if you are in the US, take heart that the physicians are willing to wait for the MRI. If they felt it was something life threatening your son would have the test as soon as possible.

Also remember to take care of yourself in this. You have to put your own oxygen mask on first. Do your best to stop consulting Dr Google. There are many things you don't know yet about what your son is experiencing and all roads lead to the worst case scenario when you're looking online for answers.

Finally, I will share with you my philosophy when it comes to bad medical news. I have a number of chronic debilitating medical conditions. At this point if something is wrong then I want to know -- because whatever is happening is there whether I know about it or not. Whatever is causing your son's double vision is going to get treated now that he has outward symptoms.

I wish the best for you and your family and hope that whatever is causing this can be resolved as quickly as possible.
posted by We'll all float on okay at 4:28 AM on July 25, 2017

I went through a "bad health thing turns out to be much worse health thing" with my teenage daughter this spring. She got great care, and is doing well now. In case they're useful, some takeaways we got from the experience:

- The waiting phases are the worst parts, hands down. The only decent solution we found for managing that was keeping busy with other things, sometimes very deliberately. Don't feel badly about urging your son to keep on going with schoolwork, especially if he is willing and able. You should look for things to keep yourself busy, too. Exercise, funny movies and crossword puzzles were all helpful to me.
- Feeling powerless is normal -- it's biology, as Ursula Hitler says. It's so important to remember that everything you've done to raise your child well is in preparation for situations like this.
- If you can stop looking at Dr. Internet, stop. If not, find other ways to frame your research besides envisioning catastrophe -- like questions to ask at consultations, or identifying what tasks (insurance, specialist selection, etc.) might be ahead, or what support is available.
- We kept a small notebook specifically for my daughter's situation, and took it to all consultations. It turned out to be a great place to store appointment cards, take notes (relying on mental recall doesn't work well as well as you think), and write down questions in advance.
- Don't be afraid to have a sense of humor amongst yourselves. Be kind to each other. Therapy can also be really helpful.

I'm sure things will go well for your son! You'll be in my thoughts.
posted by gnomeloaf at 4:37 AM on July 25, 2017 [1 favorite]

This happened to me last year. I was hospitalized for IV steroids, MRIed up the wazoo (nothing exciting showed up) and it was assumed my immune system was freaking good out in response to an earlier infection. I improved.... and it came back about a week later. This time, my MRI was concerning for an illness like multiple sclerosis or neuromyelitis optica (sorry on my phone can't link). Regardless, my vision is back to normal at the moment and I have been without an episode for over a year.
posted by i_am_a_fiesta at 5:10 AM on July 25, 2017 [1 favorite]

What I would want to know right now (well the first thing, anyway) is under what circumstances should your son go to the emergency room. For example, I had back pain last year from spinal stenosis that put me in urgent care, and the doctor made sure to tell me as she was sending me home (with my short-term course of Percocet and an appointment for a followup with my primary care doc) that if I started feeling tingling, numbness, or weakness in my legs that it was time to get myself to the emergency department immediately. Fortunately that didn't happen, but it was very good to have a clear line between "this sucks but I can deal with it by appointment and try to live my life in the meantime," and "go to the ER, do not pass Go, do not collect $200."

In a situation like this where it seems like the root cause is basically unknown and there might be an underlying neurological component, that's what I'd want to know. When does this go from being a sucky thing but one that is unlikely to get worse from waiting, to something where he needs to be in a hospital getting treated as quickly as possible? In an emergency there are no appointments for the MRI, or even (god forbid) the surgeon. They make everything happen as fast as they possibly can and damn everything else. If we're talking about things like brains and eyes, I'd want to know under what circumstances I should treat the situation as a genuine emergency.
posted by Anticipation Of A New Lover's Arrival, The at 5:50 AM on July 25, 2017 [3 favorites]

For what it's worth, my experience is that when doctors are worried about something really dire, you don't have to wait a couple of weeks to a month for an MRI. They pull some strings and get you an emergency appointment right away. In my experience, you know when doctors are really concerned that it's something very serious. Something in the tone changes. What you've conveyed here doesn't sound like doctors who expecting a really bad outcome.

but if we get bad results later, I am going to feel terrible about sending him back to school.

No matter what results you get later, your son is almost certainly better off being back at school than he would be sitting around at home freaking out.

Hang in there, and don't google! Google is the enemy of your sanity during any medical situation. You'll always fixate on the worst possible diagnosis, and chances are this is not that.
posted by ArbitraryAndCapricious at 5:55 AM on July 25, 2017 [3 favorites]

Agreeing with ArbitraryAndCapricious. The fact that they didn't move him to the front of the line for an MRI is reassuring to me. If I were really freaked out I'd go to the ER. They might not do an MRI immediately but they might do a CT first to get a rough idea of anything significant in the brain. I've been able to get an MRI this way when getting a run around in scheduling one on the routine schedule.
posted by otherwordlyglow at 7:06 AM on July 25, 2017

Double vision is a very common effect of carbon monoxide exposure.

Since this happened on a fairly long drive, you might want to examine that car for an exhaust leak. But even if you find one, I think it's still a good idea to follow up with all the medical tests, because CO exposure will often cause underlying problems to surface.
posted by jamjam at 10:09 AM on July 25, 2017 [3 favorites]