What weird, undiagnosable health malady am I suffering from?
April 10, 2011 8:36 PM   Subscribe

You’re not a doctor, and you’re not my doctor, but I’ve seen a dozen of them to mostly no avail. Maybe you can help. Something strange is going on that no one can diagnose.

I know asking for medical advice online is just about as sketchy as asking the Internet for legal advice, but after about a year and a half of jumping from doctor to doctor, I’m almost no closer to figuring out what’s going on with me than a year ago. A year and a half ago, I started having some bizarre medical problems, and I figure that someone, somewhere must have had a similar set of symptoms, and maybe that can help get me on the right path. I’m not necessarily looking for Dr. House, so to speak, but some ideas that I can take to the doctor would be a gigantic benefit. Whatever’s got a hold of me has been affecting me for some time now, and it’s really taking it’s toll. Any help or suggestions (however off the wall) would be tremendously appreciated. Long post ahead.

In October of 2009, I started having some really strange problems out of nowhere. It started happening one day out of the blue. I began having a really strange, foggy-headed feeling that was accompanied with visual problems. I felt like my eyes were gazing into the distance, and I was a bit more bothered by lights and patterns. The groggy, foggy-headedness bothered me the most – it almost felt like a slightly buzzed/high feeling. That said, the visual problems were very noticeable (but less of a deterrent). A week before this happened, I was very sick – I had a strange, three-day flu that struck me with a fairly high-grade fever (around 103). This was right around the swine flu epidemic, so I jokingly referred to it as such. In any case, I first noticed the visual and mental problems about two days after I felt better.

It began to happen for a few hours here and there during the week. Within two months, it was most days of the week. A few months later, it was (and still is) every day. The mental foggyness comes and goes throughout the day (typically worse in the mornings and better at night), though the visual problems are present all the time. The mental problems have since gotten better, though the vision problems have gotten worse. I am extraordinarily sensitive to light now. I have to wear sunglasses indoors at times, and I see the after-images of even low brightness lights. Car taillights and stoplights bother me. If a camera flashes, I see the flash in my vision for upwards of ten minutes. The mental fatigue, I think, has to do with the visual problems, because they generally improve when my vision is less fatigued. As an audiologist mentioned to me at one point, people will get the foggy-feeling sometimes when the brain is getting mixed or altered signals from either the auditory or visual system. I think the latter is the case here. Additionally, I have visual disturbances around patterns or high contrast areas – flickering lines or a moiré pattern sensation.

In any event, I’ve had the following tests and procedures done (thankfully, I have good insurance). Most of them have given little information. While it’s great to know I don’t have a brain tumor or anything, this “illness” is continually sapping me of energy and causing me to become disoriented at times. Does anyone have any ideas or suggestions? I’ve done my fair share of Googling over the past year or so, but if anyone has had any similar problems (with a resolution, even!) I’d love to hear, even if it is just something more to ask the doctor about. In any case, I’m an otherwise healthy male in my mid-twenties.

• Blood for deficiencies, auto immune, pathogens (Vitamin D deficiency and nothing else – no Lyme or Lupus).
• EEG (negative)
• EKG (negative)
• CAT scan (some blocked sinuses – ended up having minor sinus surgery)
• MRI (clean)
• VNG (no vestibular problems)
• Ophthalmologist exam (no structural problems with the eyes, though he confirmed that I do have “extreme photophobia” present).
• Had wisdom teeth removed (not really relevant, but what the hell :)).

Thanks in advance, hivemind. I have faith in you!
posted by HonorShadow to Health & Fitness (47 answers total) 9 users marked this as a favorite
What's going on with your diet and lifestyle?

Have you considered looking into alternative medicine or an integrative doctor who uses both conventional and alternative therapies?
posted by hansbrough at 8:39 PM on April 10, 2011

Off the wall - could this be migraines? potentially without the "pain".

I believe your visual symptoms are consistent with migraines as would be the fatigue and the photo sensitivity.

Perhaps you might try some of the more common migraine treatments and see how you feel...
posted by NoDef at 8:47 PM on April 10, 2011 [12 favorites]

None of this sounds too terribly out of the norm for migraine symptoms (from what I know from friends and family members -- not first-hand).

Have you talked to your MDs about that?
posted by pantarei70 at 8:48 PM on April 10, 2011

Are you taking any medications? Photophobia is a pretty common side-effect.
posted by Sys Rq at 8:53 PM on April 10, 2011

I occasionally, get those migraines without pain that earlier posters have mentioned. My visual symptoms are pretty much exactly like what's pictured here, it's accompanied by a buzzed/slightly-out-of-it feeling, and afterward I'm more tired than usual but not so exhausted that I can't function.
posted by Blue Jello Elf at 8:58 PM on April 10, 2011 [3 favorites]

This sounds a LOT like the migraines with aura that I get sometimes. Sometimes there is accompanying pain (BAD pain) but the last two times, I got all the symptoms below and either no pain or very mild headache:

-a ragged, bright circle or oval in the corner of my vision that has a flashing, flickering outline
-this circle/oval gradually gets bigger and bigger, eventually obscuring vision in one eye
-photophobia--I have turned out office lights or put on sunglasses indoors to deal with it
-feeling "out of it" or groggy, forgetting words, not able to form coherent thoughts or sentences

The video partway down this page has a reasonably accurate representation of what an ocular/visual migraine can look like.
posted by hurdy gurdy girl at 9:08 PM on April 10, 2011

When you had the flu, had you traveled out of the country recently?
posted by zippy at 9:12 PM on April 10, 2011

Migraines. (Also me when I'm drunk, but that's a special case.) Even after you deaden the pain, in my case with a migraine every piece of sensory information goes though all distorted. Bright lights are painful, all sounds have a rushing, vertigo inducing element. Movement feels wrong.

Some people experience migraines after flu related brain damage, or so I've been told. My partner's mother never had migraines in her life until something went wonky with her optic nerve, and that's believed to be linked to an illness she had.
posted by Phalene at 9:13 PM on April 10, 2011

Have you been tested for West Nile Virus? It starts with a fever that lasts only a few days, and photophobia is one of the symptoms.
posted by iconomy at 9:18 PM on April 10, 2011 [3 favorites]

Nth'ing ocular migraines. They're weird things. Sometimes my visual effects and fatigue are accompanied by smells that aren't there.
posted by JaneL at 9:25 PM on April 10, 2011

All my friends with undiagnosable maladies had recently returned from international travel. You?
posted by salvia at 9:28 PM on April 10, 2011

Try googling "post viral fatigue syndrome" + "visual symptoms" and see if anything that comes up sounds familiar.
posted by Serene Empress Dork at 9:36 PM on April 10, 2011

Have you tried spending an extended period of time staying somewhere other than your house? Sometimes mold or industrial chemicals will do that. If it's possible for you to take a couple weeks vacation to somewhere far away, you might be able to tell if the cause is environmental. A story I can't stop thinking of is the band teacher who had awful, undiagnosable symptoms until they cultured the inside of his trombone (that he played every day), and found some crazy bacteria growing inside.
posted by Jon_Evil at 9:43 PM on April 10, 2011 [2 favorites]

Your visual symptoms are close to what an elderly relative of mine has had, suddenly and undiagnosably, in the last couple of years. I will be watching this thread with interest.
posted by LobsterMitten at 9:52 PM on April 10, 2011

Another vote for migraines - mine have manifested as fogginess, quasi-drunkeness, etc. without head pain in the past. And definitely sensitive to light, etc. Worth a discussion with your favorite neurologist, for sure.
posted by somanyamys at 10:44 PM on April 10, 2011 [1 favorite]

I agree that much of this sounds like migraines, except that the photophobia with migraines is usually transient. But yeah, I thought "ocular migraine" from your second sentence. I'd hit up a neurologist next.
posted by KathrynT at 10:45 PM on April 10, 2011

This is a long shot, but it could be a late persistent Lyme disease... any tick bites?
posted by tvdveer at 10:47 PM on April 10, 2011 [2 favorites]

I also thought of tick bite fever - are you sweaty and twitchy? Also, have they tested you for syphilis?
posted by meepmeow at 11:08 PM on April 10, 2011

My first thought was migraine, also. It's not a perfect fit: it seems odd that the photophobia isn't episodic like the other symptoms. Still, perhaps you could try treating it as a migraine for a while and see if that has any effect, like NoDef suggests.

My second thought, too vague to be really helpful: I am given to understand that there are viruses that leave you with random neurological symptoms after the actual infection. (Some years ago I and a few people I know all had a mild flulike disease, and afterwards were variously fatigued and developed multiple large numb patches on our skin. Pretty distressing. We sought various levels of medical attention for it, but even after MRIs and so forth, the medical response was "we don't know. sometimes viruses do that. it'll probably clear up." It did after a couple of months, fortunately.) So perhaps your situation is similar. But even if so, knowing that probably doesn't help you at all. :/
posted by hattifattener at 11:23 PM on April 10, 2011

Dude, you need to give us more info:

Diet (what do you eat...), weight, lifestyle (sedentary, athlete, somewhere between...where?), what kind of working conditions do you have, what kind of living conditions do you have, what do you sleep on, what are you allergic to, what foods do you hate, vitamins/supplements, how much water do you drink, how do you cook?, sexing? (none, tons, somewhere between, many partners, few, 0, what?).

Any medical conditions, any past accidents, car crashes, falling down stairs, sucker punches, etc?

After all that:

Tell me how you are different from the general populace? What habits, choices, body functions, distinguishes you from the general populace?

You've been to several doctors and you havent learned shit. It happens. But when that happens, you need to realize that there may be some factor that they aren't looking at...or one that you haven't told them about.

The internet is awesome for a lot of stuff...medical diagnoses...not so much. But there are a lot of eyes here, and some of them are kinda nosy. Giving all this information will have tons of people googling all sorts of shit like "well he is a climber living in washington state...and washington state park does have this specific kind of spider on these cliffs...and he may have gotten bitten by it, because he shows all the symptoms." Or you may get a bunch of douches saying "you need to center your chakras".

But we need more info about YOU.
posted by hal_c_on at 11:37 PM on April 10, 2011

Oh...and all that info doesn't even include anything from your family. Thats a whole other set of variables to look at if we don't find anything using your info.
posted by hal_c_on at 11:38 PM on April 10, 2011

To hal_c_on's list, I'd add: Age? And is there anyone you spent time with near the time your symptoms started who might also have developed something similar? Where do you live, and where have you lived or traveled in the last couple of years?
posted by hattifattener at 11:54 PM on April 10, 2011

Sometimes viruses affect the nervous system and you get neurological symptoms. Unfortunately it's a bitch to diagnose, sometimes there's a immune reaction which can be measured, but often that doesn't happen. You may want to start here to see if something matches.
posted by VikingSword at 11:56 PM on April 10, 2011

It is really interesting.

So let's make sure we all understand this: right now, your complaint is just photosensitivity? No other problems? The fuzzy-headedness has largely/probably resolved, and there's nothing else?

The photophobia is constant, and nothing seems to exacerbate or relieve it? Well, sunglasses, I guess you mentioned them.

It sounds like you've spoken to a neurologist and opthamologist about this, right? Hopefully with referrals from a PCP who is managing everything?

It might be interesting to see an endocrinologist too, if your PCP agrees. They might have some ideas. More blood tests, at least, if that's what you want.

No doubt that you've had people shine flashlights into your eyes about a hundred times now. Any slowness of pupil response? Any change to pupil size anybody ever commented on? Of course the docs would look at that, but you didn't mention it.

Seeing a different neurologist and opthamologist would be a good idea. Sometimes you don't always get one who knows what they're doing, and it's hard to tell; seeming smart and being smart are really different things.

It's likely, if you've been seeing a lot of doctors about this, that everything that would pose a risk to your future health has been ruled out. If the photophobia is tolerable, you don't have to keep looking; you can accept it as one of those mysteries. If it's not tolerable, of course, keep looking.

It's true that weird neuro stuff can leave you with undiagnosable traces. Other people mentioned viruses, but that's not the only thing; after reading your story, I was asking myself if a seizure could do something like this. A stroke or head trauma probably could. Something small wouldn't necessarily leave any traces. Eye stuff would leave traces. Dunno about the endocrine though. Nice to have the background info, but "had a flu the week before" can really easily be a red herring. Sounds like you realize that anyways.

If your photophobia has been going on non-stop for a year and a half, then I don't think it really fits with migraine. Never heard of anybody having a migraine for that long. You could be the first, of course.
posted by nathan v at 12:45 AM on April 11, 2011 [1 favorite]

I am missing age, sex and ethnic background in your description. Your profession could also be a factor (e.g. contact with toxins).
posted by Eltulipan at 3:12 AM on April 11, 2011

It sounds pretty migraine-y to me as well. Also, it has been my personal experience that whenever there are strange seemingly idiopathic symptoms that last for months at a time with neither change nor cessation, the culprit is usually something neurological.
posted by elizardbits at 4:41 AM on April 11, 2011

Hi, all,

Didn't think I'd gather that much response! I appreciate all the helpful replies so far. I have to leave shortly, but I'll try to answer some questions briefly before I can get back in the mid-afternoon --

I have seen a neurologist, who after the MRI (on my brain, I didn't mention) was in the "well, I don't *see* anything wrong" camp. Migraines are definitely next on my list of things to check out, and my ophthalmologist did mention ocular migraines can cause those sorts of problems with my eyes. I asked if they would be present all the time, and he did say not typically. The photosensitivity does get better and worse throughout the day (typically worse around UV/fluorescent lights and when I'm in front of a screen for a while).

I think hal_c_on has a great point that there may be a factor here that I'm not considering something that could contribute and so I haven't mentioned (here, or to doctors). While I can go in-depth a bit more later, over the past year I have moved houses, tried changing diets, and have started taking vitamin supplements, if that helps at all.
posted by HonorShadow at 5:18 AM on April 11, 2011

Migraine is what lept to my mind as I read your post.
posted by Chessbum at 5:32 AM on April 11, 2011

I haven't read any of the other responses, but I wanted to let you know that I had very similar symptoms off and on during my childhood, and then they ramped way up in my early twenties, to the point where I felt dizzy almost all the time and my vision was so weird that I was afraid to drive.

As it turns out, I was having anxiety attacks. Once the anxiety was treated, the mental fogginess and the vision weirdness went away.
posted by Leta at 6:36 AM on April 11, 2011

Lyme. Get tested and then retest. Even then the testing is not entirely accurate as it tests for antibodies (which you may have anyway). Long term Lyme causes some pretty funky symptoms and many doctors are not educated on late onset/long term Lyme infection, so it's hard to find proper treatment.
posted by PorcineWithMe at 6:43 AM on April 11, 2011

You could also focus on what makes you feel better - exercise and more sleep, probably.
posted by yarly at 7:20 AM on April 11, 2011

Do you have a really good internist (not general/family doctor) batting for you? A good internist can come up with more ideas to test, can help get you referrals to specialists who'll be more interested in looking for a solution than in ruling out the most obvious answer and then dismissing you. The best internist will be one who thinks patients are a fascinating challenge and really really wants to find out what's wrong with you (and has the skills to do it, of course).

If you know anyone in healthcare in your area (doctors, nurses, etc), they may have suggestions for a good internist. If any of the specialists you've seen seemed like they were really trying to help you but just coming up empty, they're probably also a good resource to ask for a recommendation.
posted by galadriel at 8:27 AM on April 11, 2011

Hmm. I had an undiagnosed illness, likely viral, that had me in the hospital in intensive care for 7 days (I had dangerously few white blood cells. After the first bloodtest they thought I had AIDS. Luckily that was not the case). After I was stabilized and eating on my own I had major fatigue that lasted a good 9 months. I also get strange vision issues from time to time, thought they do not sound as severe as yours. I often see what looks like something blinking out of the corners of my eyes and once or twice a day my vision will completely black out for about 2 or 3 seconds then come back in a "reverse photoburn" looking effect.

I have no idea what it is, but just saying you're not alone and I believe my symptoms to be something leftover from whatever illness I had.
posted by WeekendJen at 9:05 AM on April 11, 2011

One good way to try to rule in/out Lyme disease is to convince a doctor to write you a 30-day course of Amoxicillin. (Protip: It's harder than you think. Most good doctors don't like to just throw around antibiotic scripts, with good reason.) If you end up feeling better, then you're on to something. If it doesn't do crap, it's probably not Lyme.

Now, if it's late onset/sticky, you might get rid of it after the course and have it come back. There is a significant block of doctors who don't believe this is possible, but there are some who believe that it can or have seen it enough times to at least take the possibility seriously.

That said, try to rule out anything that could be *aggravated* by antibiotics, first.

Other advice: Get a second opinion from a different ophthalmologist. Not that the one you went to is bad, but a fresh pair of eyes looking at your retinas might see something the other missed. If it's visual, it can be a spot or other anomaly that's the size of the head of a pin.

Good luck!
posted by Citrus at 9:05 AM on April 11, 2011

I only have this one idea:

Are you taking St John's Wort? I took it for a while and had pretty bad photosensitivity, both in my eyes and skin (sunburns). I am not normally photosensitive and I'm not fair-skinned so that was really unexpected for me. I also had other weird side effects, for example tingling/prickly skin when touching water.


It would be a good idea to google every supplement you're taking with "photosensitivity." Sometimes innocuous things have rare weird side effects.
posted by 100kb at 9:09 AM on April 11, 2011

The mental fog you mention rings out to me because I suffered much the same thing when I had undiagnosed thyroid disease. You might look into getting your thyroid function tested.
posted by S'Tella Fabula at 9:49 AM on April 11, 2011 [1 favorite]

I wouldn't spend a lot of time trying to figure out whether you have "chronic Lyme disease."
posted by lakeroon at 9:50 AM on April 11, 2011

If all the medical issues are ruled out, check with a trauma counsellor to see if perhaps you suffer from dissociation or something along those lines.
posted by acoutu at 10:38 AM on April 11, 2011

and nothing else – no Lyme or Lupus

Worth noting that (as others have mentioned here), the diagnostic criteria for Lyme and Lupus are both incredibly complicated and controversial. Blood tests for these diseases are notorious for producing false-negatives for borderline cases.

If nothing else turns up, you may want to revisit these test results.
posted by schmod at 11:27 AM on April 11, 2011 [1 favorite]

I'm assuming the ophthalmologist ruled out glaucoma? Other than that I'm leading leading towards occular migraines.
posted by ruwan at 2:13 PM on April 11, 2011

Talk to your doctor about treating the symptoms, even without a diagnosis. Some anti-depressants can be prescribed for fatigue. You may want to ask your doctor to rule out MS.
posted by theora55 at 3:12 PM on April 11, 2011

It sounds so much like my migraines, other than mine are more transient (and I get strokelike symptoms of my left side of my face drooping.) I have had migraines my entire life but, they have gotten much worse since I was diagnosed with Hashimoto's thyroiditis.

I would definitely seek migraine treatment and an endocrinologist to test for thyroid issues. Have you gained or lost any weight without trying to?
posted by SuzySmith at 7:01 PM on April 11, 2011

Hi, again!

Thanks for the responses, everyone. Some updates and clarifications (long reply ahead!) --

*The fogginess is still around, though it's been a bit better than when it first started. It improved when I began realizing that my problems might be vision based.

*I actually have seen a neurologist, who took a look at my MRI (which was of the brain, I forgot to mention) and didn't see anything wrong.

*I have tested negative for Lyme disease, though many of you bring up a good point that it wouldn't hurt to be retested given the reliability of the tests. My doctor doesn't seem to think it would be based on the fact that I would have developed some other symptoms by now.

*My doc initially thought it was sinusitis, so I was actually on Augmentin antibiotics for about three weeks. Even if it was Lyme, I think I inadvertently received a similar treatment.

*Migraines are a definite possibility, though my physician doesn't think it's likely (for the regular sort or the the ocular variety) based on how they usually are transient in nature. I get a migraine every few months, but aside from the headache itself, the only light-sensitivity I get is more of the "Ow, it's like I'm hungover" variety and less of the irritation and after-images.

*Thyroid levels are normal and no weird supplements -- just vitamin D and a multi. Also no MS based on my various exams.

*I did go hiking in a wooded area right around the time I got violently ill, however I didn't have any tick bites or anything that I recall.

All that said...I think further questioning about migraines and getting retested for Lyme might be the next steps. Anxiety, too...I don't "feel" anxious, but I know it can cause all sorts of weird problems. My doctor seems to think it's probably damage from that illness and that unfortunately it can take some time for it to repair.

Thanks a ton -- you've given me some more avenues to explore, and it's good to know some others have experienced similar problems. I'll be around a bit more in case anyone has any "Aha -- it's Lupus" Dr. House moments. :)
posted by HonorShadow at 8:16 PM on April 11, 2011

What was your thyroid TSH level? There was a recent change for 'normal' for TSH but many doctors and labs still use the old range. If you want to investigate this avenue more, there are some good links in this previous answer.

I had mild photophobia, moderate brain fog, low energy (among other symptoms. sinus issues as well actually) before being treated with thyroid supplements. I'm not back to normal overall but that did help those symptoms significantly. My TSH was technically normal even in the new range (it was somewhere between 2.5-3.0) but I sought out a doctor who treated me based on hypo symptoms and not being in what he considered the ideal range.
posted by ghostmanonsecond at 9:45 PM on April 11, 2011 [1 favorite]

This might be a long shot but have you had any allergy testing done? I developed allergies after a bad viral infection and had the brain fog and sensitivity to light (sign of sinus infection). You said you had sinus surgery so it might be worth having some testing done. I didn't have the sneezing, itchy eyes, etc. at first. Though they did show up later. I did notice that the time of day made a big difference in symptoms. Many molds and pollens spore at certain times of the day. I always felt better around sunset.

If you want to do a quick experiment for allergies, scratch lightly along your arm and see if it leaves a red line. My GP told me that means your body has too much histamine. You can also try putting some Benadryl under you tongue (it absorbs into your blood stream faster) and see if any symptoms get better. It's fairly safe but it can make you sleepy so you might want to try this around bed time.
posted by stray thoughts at 10:59 PM on April 11, 2011

So your doc said migraines are a possibility but maybe unlikely... have you ever tried Imitrex or one of the other triptans? My mom has painless migraines with aura.

Since my doctor put me on Elavil (amitriptyline) to reduce the frequency of my migraines, I get what I call "Migraine, Light (new and improved!)" - what I think would be a migraine if it wasn't for the Elavil. It's an annoying but not as painful headache in the same spot I typically get migraines, with no aura and less nausea than I would normally have with a full-blown migraine.

With the visual aura, the first thing I will notice is the blindness, but I won't see the flickering lights until I close my eyes. I'll be reading and suddenly chunks of text are missing, or if I'm talking to someone, the person standing next to them will not have a head. Typically for me the blind spot is in my left eye and the pain in the right side of my forehead, although I have had them reverse and had them on the same side. I know that one of my triggers is looking at the computer screen for too long. Another is being tired from not getting enough sleep the night before.

I'm going to wish you luck and end this comment now because I'm getting nauseated just thinking about it. Good luck!
posted by IndigoRain at 12:33 AM on April 12, 2011

I want to say migraine too. 'Daily migraine with aura' is an actual (if somewhat rare) medical diagnosis code, and not all migraines are painful.

For the next week, be very aware of your symptoms and keep a detailed journal of what you experience, and when. Your neurologist will make you do this anyway for a migraine work-up; might as well bring that information to your visit.

Some people find that they can stop a migraine at the aura stage with caffeine and sugar: the vasoconstriction stops the spreading depression, and even borderline low blood sugar can be a migraine trigger. The next time that you notice your vision starting to go 'off', immediately have a big drink of cola and see if it helps. It's in no way diagnostic, but it can't really hurt you and might be another useful clue.
posted by oceanmorning at 5:31 PM on April 12, 2011

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