Don’t ever assume you know what’s going on.
Although this blog is primarily about gluten-free living, gluten is only one of my dietary concerns. I have a large, and constantly-changing list of allergies.
Wheat, rye, and barley were all on the first allergy test results, so I did not bother getting tested for celiac disease, as the net result was no different from a dietary perspective – I had to adopt a gluten-free diet.
My wheat allergy was not what I was at the allergist to discover. I had been having problems with seafood that became too obvious to ignore after a visit to Gladstone’s seafood restaurant in Malibu one afternoon following a trip to the Getty Villa (before it closed for remodeling and before the Getty Center construction, which should date this part of the story a bit). I had a shrimp and crab sandwich, and partway through the meal, my throat began to swell up. Gladstone’s has lines painted on the floor leading to the bathroom, which should be somewhat suspicious, but for which I am ever grateful.
My uvula swelled along with my throat and It took me a couple days to recover, but still I didn’t seek medical counsel. That would wait for an unfortunate salmon incident that occurred the first time eating with future in-laws, several years later.
The Gladstone’s culprit turned out to be crab, not the shrimp. But adding salmon, cod, and trout to the list of potentially life-threatening food allergies essentially swore me off all seafood.
The initial test turned up some other foods that I used to eat all the time, as well as foods I have always hated. The big revelation was wheat. I remember walking through the supermarket and reading the ingredients of all the pre-packaged foods I used to buy and seeing all the wheat-derived ingredients.
But the wheat allergy diagnosis was a godsend, as I didn’t realize how horrible I had been feeling for years (decades) because of it. It is one of the most difficult ingredients to avoid (as I have no need to tell you) so it has been the focus of my “special” dietary needs.
Fortunately, avoiding gluten has become considerably easier over the last 10+ years.
Periodic re-testing has turned up a wide variety and ever-shifting palette of other food (and environmental) allergies. This would, to the uninitiated, be a daunting and frustrating circumstance, but it is pretty easy to commit to avoiding foods like celery and maple once you have experienced whole-body and life-threatening allergies, such as wheat, nuts, and seafood are in my case.
This does not make things easier on loved ones who are necessarily impacted, unfortunately. Which is the point of this blog – to make life as normal and sane for everyone afflicted by food allergies, directly or indirectly.
Before my diagnosis, I met someone who was allergic to “everything,” which sounds horrible. If she ate too much of any one thing, she would develop a sensitivity to it. As my food choices became more constrained, I became concerned that the same thing could be happening to me.
How does this happen to someone? It suggests an immune system gone wild. My limited, self-taught, understanding of allergies and immune system has convinced me that they are different, but related in ways that we do not quite understand. Or maybe I do not understand.
There is a history of autoimmune disease in my family, so this likely puts me at risk.
I discussed the possibility that I may have an autoimmune disorder with my allergist, Dr. Epstien, and he agreed that it was a reasonable thing to check. We did a whole panel of tests, which came back negative for all the usual suspects, including diseases like rheumatoid arthritis, lupus, and crohn’s. We also tested for celiac at this time, even though it was kind of a moot point (it came back negative, too).
Not long after this testing, I had a bad sinus infection. Since I’m at my allergist on a regular basis, he is usually the one to look at my ENT issues. He took a culture, which involved shoving something that looked like a mascara applicator up my nose into what felt like my brain pan. It came back negative for a bacterial infection, so we treated with a steroid nasal spray, which worked, mostly.
My sinuses has been a constant problem for the last couple years. At times, the congestion would cause me to have headaches or become dizzy when standing up quickly. This should have been a sign that something else was going on.
At the start of this year, I had what I thought was another bad sinus infection. With the light-headedness and dizziness. Work was busy and I had a trip scheduled to New York to visit the Fayetteville Free Library, so I slogged through it.
After New York, I went in to my allergist complaining about my sinuses. He took a look and saw I had a lot of inflammation. He prescribed antibiotics and took another culture.
While waiting for the restuls, the Head-Ache started.
I was diagnosed with migraine headaches when I was a little kid. They were classic migraine symptoms – localized pain behind one eye, which came on suddenly, and made me nauseous and sensitive to light. They were not long-lasting, though, so I would go to bed early and sleep it off until morning.
The migraines have diminished over time, and since college, I have gotten them maybe once or twice a year.
The Head-Ache felt like a migraine. But it didn’t sleep off. That’s fine, sometimes they would linger a day or two. But after a week, I was feeling pretty miserable.
I think you need to see a headache guy, my allergist said last Tuesday. The culture came back negative, and the nasal spray wasn’t working. The nearly week-and-a-half old Head-Ache was cause for concern. He gave me the names of a couple neurologists, neither of which had space for a few weeks. I took the earliest appointment I could get, and then called my primary doctor, who was also booked solid for a few weeks, but I was able to make an earlier appointment with one of the other doctors in her practice.
Then the visual aura started. My migraines almost never come with the visual component, but have on occasion. I had lighting bolts around high-frequency edges, and dark, moving blotches moving over everything else. Again, these typical migraine symptoms, though they typically only last 20-30 minutes prior to the onset of a migraine.
My left eye is my dominant eye; my right eye has always had considerably poorer sight, not fully correctable with glasses. Having a raging Head-Ache with visual impairment in your dominant eye is very distracting, and was interfering with my work. And life.
By Wednesday, the aura had not gone away. The dark blotches were getting bigger. And moving more. While migraines can last several days, aura generally do not. So something was wrong.
Fortunately, my appointment with Dr. Sims was Wednesday morning. She decided that while I could just have a migraine (albeit an unusually strong one), she wanted an MRI to see if there was something else going on.
MRI scheduling at St. Joseph’s in Burbank didn’t have any slots until the weekend. I was a little pushy (unusual for me), saying that I was losing vision in my left eye and that I was a little freaked out. The very kindly scheduler put me on hold and called to different departments to see if something could be scheduled sooner.
I got a 10 AM appointment on Thursday.
Providence St. Joseph hospital is a fantastic medical center. I have not had any bad experiences dealing with the staff, and they always go out of their way to make the best of what is almost necessarily a bad experience when visiting the emergency room. It is the closest thing I have found in Southern California to the Palo Alto Medical Foundation, a non-profit medical group that I would use exclusively if it were not several hundred miles from my house.
I learned about the Palo Alto Medical Foundation several years ago when visiting my parent and getting a spider(?) bite on my right arm which caused my whole hand to go numb. Which is pretty scary, but they were comforting and explained that the bite probably penetrated a nerve and it would take some time but would mostly recover. I still don’t have full feeling in my fingertips, but the had did recover.
But I digress.
My first ever MRI took about 20 minutes Thursday morning. Because my primary care physician was part of the Providence network, her office could access the images almost immediately (though without the transcribed report). They were also across the street, so after the MRI, I walked to the office and tried to set up a followup appointment. Both Dr. Sims and Dr. Szeto would take a look at the MRI and call me that afternoon, and we would schedule an appointment as necessary at that point.
That afternoon, I was told about The Spot.
The Spot could be anything, I was told. It could be nothing – a shadow. Or it could be some kind of lesion. There wasn’t enough detail to tell. So they wanted me to get another MRI with a contrast injection, and they wanted me to see a neurologist they work with, Dr. Hanna.
The MRI scheduler told me the next opening was Tuesday. I took it figuring that if Dr. Hanna thought it was urgent, she could make it happen sooner.
Dr. Hanna fit me in Friday morning and said that The Spot could be anything. It could be nothing, it could be a lesion, it could be MS, it could be a tumor. It could just be a migraine. The Spot might be unrelated to the headache and vision issues. But the follow-up MRI was warranted, and she wanted it stat. She also wanted me to see an eye doctor, Dr. Tuli.
“Stat” meant I had to head over to the outpatient scanning center right then. For an MRI and MRA with and without contrast. Using MS protocol. (I still don’t know what the MRA is, but it’s performed in an MRI machine, so it is related.)
I did not connect the MS protocol to Dr. Hanna’s mention of multiple sclerosis as a possible cause of The Spot.
My MRI/MRA scans took a little over an hour. While waiting for it, I asked my wife Giselle to schedule me an appointment for Dr. Tuli that afternoon, as my cell reception is universally poor in doctor’s waiting offices (I suspect they have begun installing jamming devices). Dr. Hanna was going to let her know that my case was urgent so that Dr. Tuli would make space for me. While the MRI/MRA was happening, Giselle got me an appointment for 2:30 pm.
After the MRI/MRA, I did something unusual – I walked to lunch. There is a Chipotle in Burbank that is about a kilometer (0.8 miles) from the office – totally walkable – but I had always driven there. I did not feel like driving (my right eye is fine, so I could have done so safely) but I had told work I would be out all afternoon for appointments, my car keys were in the office, and I didn’t want to get dragged into any work activities or explain what was going on. And I had time to walk. And contemplate.
As I walked, I was relieved I did not try to drive. I realized that if I had to rely on my left eye alone, I would be almost totally blind. The dark blotches were covering my entire field of view, and I could not make out any low-frequency details at all, even in bright daylight.
Please don’t freak out. It could still just be a migraine.
I don’t think Dr. Tuli believed me when I said I was having trouble with my left eye. Maybe I wasn’t being dramatic enough in my description. She started with a perfunctory eye exam and I told her I could not make out anything below the E on the eye chart with that eye. But at least I could read the E.
But who can’t read the E? It’s the top line of every single eye chart. It could have looked like a jellyfish and I would have convinced myself that it was an E.
So she had me take a peripheral vision test. The results were comical – the right eye was pretty normal – a big white disk with only a few areas (blind spot, eyelid) that I didn’t see the flashing lights.
The left eye was a black circle, with only a few grey spots in the upper left quadrant.
After looking at the test, Dr. Tuli asked me, do you have a family history of MS?
Why are you asking me about MS for the second time today?
She told me that my eyes and retinas looked fine. But she wanted me to see a retina specialist to be sure. She arranged an appointment that evening in North Hollywood. This I couldn’t do on foot, and I couldn’t drive as my eyes were dilated (not to mention being half blind), so I had to call for help.
The problem, and the source of the headache, Dr. Tuli explained, was that my left optic nerve was inflamed. The clincher was that it hurt worst when I looked to the right. The usual course of treatment was hospitalization for three days of IV steroids.
When I asked about the urgency, she said we needed to get started today. I should go see Dr. Dayani in North Hollywood, and then go to St. Joseph’s ER to get checked in. She called one of the doctors on call that night and let him know I was coming.
Hospital? Crap. Three days? I have a lot going on right now – how am I going to deal with that? Work is insane, we’re remodeling the bathroom, and we’re supposed to go to San Diego this weekend. The timing couldn’t be worse.
But, of course, I need to be able to see.
Giselle drove me to North Hollywood to see Dr. Dayani, who injected me with dye and flashed bright lights in my eyes, taking pictures of the dye flowing through my retinas. Which were fine, showing good blood flow and no leakage. (Ruling out a detached retina.)
Dr. Dayani also felt that my optic nerve looked in good shape other than being inflamed. He had not seen any of the MRI results, so he could only speculate, but he felt the MS hunch was probably correct, and that the IV steroid treatment was the right course of action, but that it was not necessarily a cause for concern.
While optic neuritis is a classic early symptom of multiple sclerosis, it is not necessarily a sign of advancing MS, he explained. Many people have an early flare up like this and then do not suffer any further symptoms for years.
He was surprised that I was not having symptoms much longer than 3 days, however.
Giselle drove me to the emergency room and we waited for a bed for them to admit me to.
Friday nights are busy at the St. Joesph’s emergency room.
Again, I have nothing but good things to say about the St. Joseph staff. When I had a kidney stone last fall, they did everything to make me feel like everything was going to be just fine. Even though they had drug-seeking junkies to deal with and could easily have treated us all like cattle.
Again, I digress.
I spent a few hours in the ER, and was admitted to the hospital before midnight.
The initial order was for 250 ml of steroids every six hours. For one day. But this was only the preliminary order. Dr. Hanna adjusted it to 1000 ml of steroids each day for five days.
Five days. Not three. Crap.
Fortunately, work was understanding, as were the San Diego in-laws.
It’s hard to get upset with “Theron’s in the hospital because he went half blind.”
Saturday, I was visited by Dr. Szeto, Dr. Hanna, and Dr. Tuli (all were on call, by happenstance). They had all seen the second MRI results and agreed that I have multiple sclerosis. Definitively enough that a confirming test, usually done via a lumbar puncture, was not necessary.
It is still not clear to me what this means. My minuscule research so far has indicated that this may not be a big deal, for multiple reasons. I am on the old side for a diagnosis. I am a man. And I am generally healthy (despite being overweight and having chronically borderline blood pressure). As such, I don’t have a lot of the risk factors for MS. I am hopefully enough ahead of the curve to get into a management routine that prevents this from becoming a degenerative, debilitating disease for quite some time.
They don’t know much about MS. They know what it is – an autoimmune disease which attacks the lining of the nerves, mostly white matter in the brain. This attack causes lesions, or plaque, to form which can interfere with the nervous system.
This is obviously a bad thing.
There are several sub-types, and some are far worse than others. I can only hope to fall into one of the better types, and that we can actively manage my symptoms.
They used to treat MS reactively. They used to wait for these flare-ups and then treat them with high does steroids, like I am getting now. But in recent years, a more proactive approach has been called for to avoid the flare-ups (and hopefully the damage) before they happen.
I’m not sure what the future holds. I have a lot to learn.
It is time to revisit some of my other health issues. Allergies. Migraines. Could these have been early pointers to the MS condition? If my immune system has been running wild attacking my body and the food I put in it, could getting the immune system more under control mean managing my allergies more?
Diet is considered by many to be key to MS development, though it has not been established just how or why. But having more food options could be helpful.
Though there have been no diagnosed cases of MS in my immediate family, my mother had an aunt (her sister’s mother) whose entire family succumbed to MS. No one else ever came down with it, so they assumed it was the father.
They know there is a genetic component to MS, but do not consider it to be inherited. There are likely environmental and behavioral vectors as well.
My life expectancy is likely to be 5-10 years shorter the average person. There is a strong chance that I will end up in a wheelchair, unable to walk, by the time I die.
I will be seeing doctors regularly for the foreseeable future. I expect that I will be going on long-term medication for the first time in my life. I haven’t had the real conversation with any of my doctors about the results of the second MRI. The conclusiveness of the results probably indicates that the condition is somewhat advanced.
These are depressing thoughts.
However, this could be something that goes into remission and I don’t have another problem with it for decades. I could be in my 70’s before I have another flare-up.
I’m not counting on it. But it could happen.
I have already been told by friends and family that there are others who have gone through this and are offering assistance.
I am, in spite of all the obstacles in my way, optimistic.
Over two years ago, I wrote a post on my music blog about the fact that I am mostly stereo blind. I can’t see 3D imagery (in real life or in the movies, for example) that is not highly exaggerated. One of the comments pointed me to a book by neurobiologist Susan R. Barry called Fixing My Gaze.
Barry, due to a childhood eye disorder, had severely crossed eyes as a child, which was not fixed until she was past the assumed “critical period” for developing stereo vision. She was totally stereoblind.
In college, she learned that this was not true of everyone. But that she would probably never see in 3D.
But over time, she began to learn that there may be a way to develop stereopsis (the ability to see in 3D), but it took her more than 20 years to find the right doctor. And once she found him, it took her a year of intensive vision therapy to train her eyes to work together to see in three dimensions.
The biggest hurdle she had to face was the preconceived notion that her problem was unfixable. That the brain, once developed, could not fix itself. But these notions were based on research on monkeys and cats, and didn’t ever work outside the observational box, so to speak.
The brain and the nervous system still hold mysteries aplenty. Persons who lose some sensory input often have development in other areas to compensate. The brain is capable of rewiring itself to make up for defecits.
My situation is admittedly not the same as Dr. Barry’s. I bought the book in 2009 when it was recommended to me, but it sat on my Kindle unread until my hospitalization. I found it to be inspirational.
Initially, my thoughts were “after my eye is recovered, I will find a doctor to give me vision therapy to improve my stereo blindness.” But now it may be that I need therapy to help recover the sight in my left eye (which is showing improvement, but I am still half blind). I am told it will be 2-3 weeks before it recovers as fully as it can (which may not be 100%).
But perhaps there are other things I can do to strengthen my damaged nerves. And those not yet damaged. Particularly in the way of mobility, which is a big issue for many MS sufferers.
MS patients are often told not to engage in strenuous activity for fear of causing a flare up. But ironically, sunlight and vitamin D are considered to be helpful for preventing the onset of MS (though, as with many aspects of the disease, they are not sure why). So I expect outdoor activity is probably important.
I am a computer-bound nerd and do not see much daylight. This is something I have to fix.
Stress is also considered a factor in MS. And also migraine headaches. Might there be a connection? In any event, the last two months have been the most time of my life at work. (I actually take this as a good sign, in that my current problem may be an early signal and that I have the opportunity to fix in the future.)
The night before last, I watched an episode of House from my hospital bed. It struck a funny nerve. My life has turned into an episode of this medical procedural show that focuses on diagnosis of unusual conditions.
Usually, the patient on House ends up vomiting blood and collapsing. Which has not happend to me yet. Most episodes end with the team figuring out what is going on. And even if it means an un-curable condition, there is relief in knowing.
I’m very glad I know what is wrong with my brain.
Well, one of the things wrong with my brain.
We trust doctors. They are figures of authority in our culture. They spend years training to help us, and they generally tend know more than we do.
Once a doctor tells you that you have a problem (you have an allergy to wheat, for example) it becomes easy to focus on that and assign all our maladies to that problem.
My diagnosis for migraine headaches and food allergies may have kept me from getting an MRI sooner than I should have. Maybe. I don’t think this is a clear-cut case. But I do believe that my “sinus infection” last year was probably a sign of inflammation due to the MS. And I wish MS could be diagnosed from the same blood panel that ruled out lupus, crohn’s and rheumatoid.
Letting MS become the focus of my life, and the scapegoat for all ailments may mask other problems, lest I miss something else, potentially worse, in the future.