On Monday, July 22, we were driving down to Myrtle Beach, NC when I noticed something odd. I was feeling very tired while driving which caused me to close one eye to try and focus better. At that point I found out that my left eye was incredibly blurry. I could see fine with my right eye, but the left was dangerously blurry.
When we arrived in town, I did some minor testing. I couldn't read very well with my left eye using either my regular lenses or the bifocal reading lenses. I put the book up near my nose where I usually focus without my glasses and I couldn't see the print with my left eye like that either.
The next morning, odd symptom number two appeared. I bit into a doughnut and the entire left side of my face had a quick flash of numbness which settled into my nose and felt like my nose was asleep. It was weird but not scary.
The morning after that the numbness thing happened again (once again when biting into food) but this time my face remained slightly numb for the rest of the day.
Driving home on the 25th was a bit odd, but manageable, I felt comfortable driving despite the blurriness. I could read street signs, at least when we got close to them, although I couldn't read license plates for our search for state license plates. After I got home, I did an internet search for my symptoms and scared the willies out of myself with all the terrible things I found.
Friday the 26th, I went to visit my internist Jennifer Stearns, M.D. She did several quick tests to make sure that I didn't get dizzy with my eyes closed and that the two sides of my face lined up properly. She laid my fears of a stroke to rest and took my blood to test for other possibilities. She was concerned about the eye problem and told me to see my ophthalmologist THAT DAY without fail. I headed straight over to my ophthalmologist office and was given a walk-in appointment for later in the afternoon with Dr McRill(?) who I had never met before.
The nurse had me look at the eye chart and to read off the highest line I could read with each eye, but did no tests beyond that. She then dilated my eyes. Dr McRill spent about 30 - 45 minutes looking in my eye to see if there was a physical reason for the blurriness. She put some sort of lenses on my left eye and looked hard but said there was no physical problem. She recommended a visual field test to try and map the blurry spot. My plans were to take my daughter to New York City for a few days that week and neither Dr. McRill nor Dr. Stearns thought there would be any problem with that, so I made an appointment for a visual field test for when I returned from NYC and headed off.
I returned from NYC to find an answering machine message from Dr. Stearn's nurse. All of my blood tests were negative (I believe the tests were: blood count, Lyme disease, thyroid function, and kidney function) It was recommended that I repeat the Lyme disease in a month just because Lyme often has false negatives. I made that appointment for August 29, 2002.
Thursday, August 1, I headed in to have my visual field test. I've never had this one done before, it was kind of interesting. You stare at a little yellow dot and they flash little teeny lights all over the place. I was told to click this little clicker button every time I even thought that I saw a light. They did the right eye first. Click, click, click....click...click, click, click, click. Then we moved to the left eye. ..........................Click................click, click.............click. Even I could tell I was failing this test big time. The technician told me that Dr. McRill would give me a call in the morning, so I headed on home. Later in the day I had an appointment with Dr. Parran, my dentist. Because the numbness always seems to start from my chewing something, I wanted to have my teeth and jaws checked. He gave me a complete mouth xray and looked me over carefully and said there was nothing wrong with teeth or jaw. He mentioned that the nerve I'm dealing with in my face is the trigeminal nerve and he recommended that I see a neurologist. I told him I would pursue that after I'd heard back from the ophthalmologist.
The next day Dr. McRill called with one of the all time stupid questions I'd heard yet. 'So are you still having a blurry spot?' (Now normally you might think that this is a very good question, but when I answered yes, she said, 'Well it does show up in the visual field test.') Excuse me? If it showed up in the test I'd taken the previous day, why the heck wouldn't it still be there? Oh well..... Anyhow, Dr. McRill said it was time for me to see an ophthalmological neurologist. She said that she'd make the appointment for me, probably for early September and that her office would call and tell me when and where the appointment was. I went out and did several errands and when I returned, there was an answering machine message from her office saying that the appointment had been made with a Dr. Kelman for Tuesday, August 13. That was nice and quick, but unfortunately, it was also the day that I was picking up my kids from their camp in Maine, so I called Dr. Kelman's office to change it. Dr. Kelman himself answered the phone, completely stressed by the lack of his secretary and asked me to call back. Unfortunately, the secretary was still not there when I called back, so I had to wait for Monday to change my appointment.
While all this was going on, the face numbness thing was progressing. I had reached a point where there was never a time that the left side of my face didn't feel numb, especially the nose, back teeth and around my eye. Pretty much every day, I'd get the jolt of pins and needles and the numbness would increase and then slowly move back to what has become my 'normal' state. The jolt only ever occurred when I was chewing something, it didn't seem to matter whether it was something hard or soft, but it usually occurred during the first meal of the day, but rarely on the first bite. A couple of times it happened more than once in a day, but generally not. The feeling was startling but not painful, kind of like a gentle falling asleep (like when your foot falls asleep.)
Saturday August 3rd I had my first really hard jolt in my face. I still don't want to use the word 'pain' when describing the sensation, but it had moved up to something that was all encompassing and impossible to ignore. My left eye teared up and my nose started running. I felt as though my face was swollen, but people around me didn't seem to notice that I was having problems, so I guess it didn't show. The aftereffects were the same. My face numbness subsided to a general numbness which was stronger out at the edges (nose/eyebrow/ear).
Monday August 5, I called and made my new appointment with Dr. Kelman for Wednesday August 28th. On Tuesday night I drove out to visit a friend at his house and discovered that I'd lost the ability to read road signs. I simply couldn't focus quickly enough with my bad eye to get the words until I'd passed the sign. Dr. McRill had told me that I should use both eyes and not close the left one, but it's getting to the point that that is no longer an option. I have to close my left eye if I want to focus. This week I also moved the font size on my computer up to size 24 and 36 making use of the computer much easier.
On Friday, August 9, I was at the mall having lunch with my friends when I had my second very powerful jolt to my face. My eye went even more blurry and between the tearing up and the strength of the jolt, I couldn't see at all. My friends were watching with great concern and said that my face went completely red when it happened. (One described it as a shade of red that was a ten on a scale of 1 - 10, another said on that scale it would have been an eleven and added that my face had been mottled.) Once again the feeling wore off, but I decided to call Dr. Stearns and let her know about this episode when I got home that day. Dr. Stearns suggested a trip to a regular neurologist as well as the previously scheduled trip to the ophthoneurologist. She gave me the name of Dr. Getzoff, and I made that appointment for Friday, September 13.
Since that Friday, I've managed to have some really hard jolts when my husband or assorted other medical professionals are around, and none of them have noticed the red face. That may have been a fluke. My husband, Rick ( an anesthesiologist), has watched me through several of these jolts and he brought up the possibility of trigeminal neuralgia. At this point I've probably had 2 jolts that I would classify as mind numbingly painful. The sensation is definitely getting a lot stronger when it hits.
Over the last couple of weeks, the face thing seems to have worsened. I have discovered that I can no longer wash my face in the shower because when I let water run on the left side of my cheek I get the jolt REALLY hard. When sitting at a friend's house where a fan is running I felt like it was almost going to trigger, but it never quite happened. I didn't quite have the nerve to allow the fan to aim at me just to see if I could trigger it. I may try this later just to see.
Vision wise, I can't decide whether it's getting worse or if I'm just that much more aware of the fact that the eye is blurry. I have bowed to intelligence and am trying as much as possible to get rides from friends rather than driving especially on gray days or when it's dusk or dawn. It is particularly hard to focus at those times. It's much harder to see the green and yellow lights (although red is no problem, thank god) and I can't read street signs at all anymore. (Note: I can read just fine if I have the time to focus, like when I'm stopped at a traffic light, I just can't read quickly anymore. Things come in and out of focus too much.)
Random Note: My friend Gale called with the information that some friend of a friend of hers had the same problem with her face and was cured when she stopped drinking caffeine. I've put that on my list of questions to ask the neurologist in September, and I'll probably try and watch my coke intake, but I'm not giving up the stuff of life unless I have to.
On August 27,2002, I stuck my arm in the blood pressure machine at Safeway and was freaked out by my bad reading (140/93) I generally have a much better reading (in the 120/80 range) so I'm going to hope that the high blood pressure is the result of stress, but I need to watch this and stay aware of it.
August 28, 2002: I met with Dr. Kelman today. I had another visual field test which we could not compare with the previous one because Dr. McRill's office failed to deliver my results to his office. Grrrr. I could have hand carried them there if they'd let me. Dr. Kelman thinks he knows what's wrong with my eye. Something called Retrobulbular Optic Neuritis. The bad news is that is often a first symptom of Multiple Sclerosis. He has given me a prescription to have an MRI done and I will be making that appointment for as soon as possible in hopes of carrying the MRI films with me to visit Dr. Getzoff. I also have a followup appointment with Dr, Kelman scheduled for October 1, 2002. Dr. Kelman wants copies of everything that Dr. Getzoff decides.
"MRI of Brain and Orbits
Indication: New onset optic neuritis left eye
Please obtain MRI of brain and orbits with and without gadolinium. Evaluate for optic nerve lesions and for demyelinating lesions elsewhere.
Please give the patient a copy of the films to bring with him to the office for my review. (Signed Shalom E. Kelman, MD)"
I found a web page that gives an idea of what I'm seeing. Look at the pictures, he's got it down pretty well, except that the colours are dimmer and it's just all around darker when I look around with my left eye.
August 29, 2002: Today I have my followup blood test to rule out Lyme disease and I also have my regular yearly gynecological checkup. I intend to tell Dr. Hogan (my gynecologist) about all of this in hopes that she'll immediately identify my problem and the cause and it will all stop here. My hopes are not high.
Gave copy of document thus far to Dr. Stearns and Dr. Hogan on 29 August 02
So what happens next? Well go ahead and read on about how my September went!
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