What a crazy few weeks it has been! I was torn between blogging about the events as they occurred, or waiting until we had some answers. I opted for waiting because the last thing I want this blog to become is a whining place for my medical woes. But now that we have some concrete information I will share what has been going on and support it all with some factiods so we all come away from this post informed and educated on some new topics. (Belle = factoid dork)
November 12 through 15 – I’m in Texas visiting a girlfriend and don’t feel quite myself but can’t put my finger on what feels bad. Something is just… off.
November 15 – 17 – I start to experience a dull pain behind my right eye. Discomfort appears in my left eye around the 17.
November 18 – I develop a wicked headache right above my eyes at work.
November 19 – I call into work b/c of headache. That evening Jay and I go grocery shopping and I notice I can’t see the signs in the store and that my vision has a strange aura about it. I mention to Jay and he says I’m likely having a migrane and points out I’m also wearing an old prescription in my glasses.
November 20 a.m. – I go to the walk-in clinic and am diagnosed with a sinus infection. I do not have a fever nor is my snot green. I am skeptical but start the antibiotics.
November 20 p.m. – At 4 p.m. I leave the house to run an errand. Within 2 hours my vision deteriorates to the point I can no longer see street signs, billboards and light colored cars. I slowly drive home and call the walk-in clinic and explain my symptoms. They say I need to see the ER right away. At the ER I am re-diagnosed with conjunctivitis in both eyes, i.e. Pink Eye. They start me on Vigamox, an antibiotic eye drop, and say that if my vision does not improve within 2 days to see a specialist.
November 23 – my vision is considerably worse. My entire world is out of focus and now shrouded in a very dense white fog. Scared, we call an ophthalmologist. Ophthalmologist Number One takes one look in my eye and says, “Do you have lupus?” And I immediately freak out. What had happened was that the inside of my eye had swollen up. My iris, the green portion, was swollen so much it had gotten stuck to the lens and was not able to dilate. They put several rounds of strong dilators in my eyes and my pupils still refused to open. She immediately handed me off to an iris specialist to continue treatment. After a thorough examination, he said that I was suffering from Uveitis, also known as Irisitis, in both eyes. This is extremely rare to see in both eyes in someone that is healthy. He starts me on an aggressive treatment of hourly steroid eye drops to reduce inflammation and three times a day dilator drops to try and force my pupils to open and break the iris off the lens.
Then we set to work trying to figure out what has caused my eyes to swell. Uveitis can be seen in perfectly healthy people, or it can be seen in folks with infectious diseases (think bug bite diseases, Hepatitis, toxoplasmosis, etc.) or in people with autoimmune disorders (think lupus, rheumatoid arthritis, Sarcoidosis, Chrone’s disease). He took an exhaustive medical history to whittle things down (do I have any rashes, do I hurt anywhere other than my head and eyes, have I been bit by a bug, do I have any sores in my mouth, do we have any new pets, etc.) and ordered the first round of blood tests and a chest x-ray (to check for problems with my lungs or heart and to view my lymph nodes).
Downstairs I went to the lab where I took my first major blood draw like a total wimp – they laid me down and the entire staff came in to talk to distract me and keep me from blacking out. I made it through and then celebrated with some vegan ice cream – just like a little kid. Major points to Jay!
November 24 – I return to the ophthalmologist for a checkup and he says things are moving slightly, but there is a lot of scar tissue left in my pupils. I am instructed to continue the drop treatment and return in a week. If I have pain or nausea, be seen at the ER. The only tests that are in is the chest x-ray (clear) and the Rheumatoid Factor (slight positive). The doctor said he does not want to read to far into the Rheumatoid Factor until we get the rest of the test results.
November 25 – Around dinnertime on Thanksgiving the right side of my head begins to hurt. The pain comes and goes in waves and it increases in intensity. Jay gets Thanksgiving dinner on the table for himself and our guests, he wolfs it down, and then he leaves them there to enjoy the meal and pie and takes me to the ER. At the ER they look at my eyes and say that they look the same as on Wed. The doctor pulls the test results from my blood work and returns to tell me that they were all positive for autoimmune disease. They give me an IV and take more blood to check my vitals. The results come back good, meaning my immune system is not attacking any other organ. I’m sent home with orders to see a Rheumatologist on Monday and a prescription for an anti-nausea medicine.
November 29 – I set up an appointment with a Rheumatologist for Friday afternoon. The Rheumatology clinic orders another 6 vials of blood drawn to test for more factors. I take this blood draw a little better and DO NOT require a team of distractions! Go me!
December 1 – I see the eye doctor again. Some positive progress is being made, my eyes have dilated and the iris has released from the lens. I do, however, have inflammation in the back of my eyeballs. This is the super serious inflammation that can lead to blindness. Mine is pretty minor and the doctor says we may need oral steroids to get it down. I request one more week and he says that is fine. I’m now continuing the hourly drops and drinking more water than I have ever consumed and eating “anti-inflammatory foods.” My hope is that through hydration, diet and rest, my body can take care of the inflammation on its own. We’ll see next Wednesday.
December 2 – I see my allergist/asthma doctor to have my lungs checked out. I get a good report here.
December 3 – I see the Rheumatologist. She examines me, asks me more questions and then reviews all the blood work. I will summarize here:
ANA Test – An ANA test detects proteins called antinuclear antibodies in your blood. Your immune system normally makes antibodies to help you fight infection. The antibodies detected in an ANA test are different. They may attack your body’s own tissues (in my case they are attacking my eyes). The ANA test is based on the following scale:
1:320 = slight elevation but nothing odd. Doctors do not consider it a problem.
1:640 = elevated and indicating an autoimmune condition/flare up
1:1280 and up = very high indicating a major flare and a major problem.
My ANA test result was 1:640 meaning it is high and something is wrong, but I’m not on the brink of death.
Sed Rate – Sed rate, or erythrocyte sedimentation rate (ESR), is a blood test that can reveal inflammatory activity in your body. When your blood is placed in a tall, thin tube, red blood cells (erythrocytes) gradually settle to the bottom. Inflammation can cause the cells to clump together. Because these clumps of cells are denser than individual cells, they settle to the bottom more quickly. The sed rate test measures the distance red blood cells fall in a test tube in one hour. The farther the red blood cells have descended, the greater the inflammatory response of your immune system.
My sed rate came back normal, meaning only my eyes are being attacked and my inflammation is not wide-spread.
RA Factor – A Rheumatoid Factor test measures the amount of rheumatoid factor in your blood. Rheumatoid factors are proteins produced by your immune system that can attack healthy tissue in your body. High levels of rheumatoid factor in the blood are most often associated with autoimmune diseases, such as rheumatoid arthritis and Sjogren’s syndrome.
My RA factor was a low positive. The doctor explained that this indicates that this coupled with the high ANA means I could develop Rheumatoid Arthritis. Some family members have had this disease in the past, which increases the likelihood.
The ANA and RA are two major tests that indicate I have a latent autoimmune test. There were several others that I do not remember the specific names of. All the viral tests and the tests that point to more specific diseases came back negative. Based on the positive reads we got, the Uveitis and the family history of some autoimmune disorders the Rheumatologist deduced that I am predisposed to develop an autoimmune disease. In November something triggered my latent autoimmune issue and it showed its face for the first time through Uveitis.
She said that without the Uveitis flare, I might not know for many years that I have this predisposition, or, I might NEVER know.
Causes for autoimmune flare-ups seem to be a little more vague. I didn’t get a lot of information from the specialist other than eat well and exercise, which I already do to an obsessive point. What I have learned is that some scientists are seeing a link between stress and autoimmune flare-ups/uveitis. This, I think, might be my major wake-up call as stress is the one major thing I do not manage well. I have chosen to look at the past two weeks and all the scary possibilities that accompanied them as one big warning sign. I have this predisposition. It has shown itself once through a very scary and serious condition in my eyes, which are organs that can’t be replaced should they fail. It seems to be imperative that I maintain my healthy lifestyle – eating well and exercising daily – to keep this thing at bay. In addition, I need to seriously re-evaluate how I manage my stress and find new ways to deal with it as the consequences of not have the potential to be very serious.
As for my eyes today – they are still sick. I’m scared for them and religiously following the eye drop schedule the doctor outlined for me. As much as the thought of oral steroids scares me, if the inflammation is not down by my next appointment, I will take them. I’ll be certain to keep you all posted and we can all have a little long-distance party when the eyes get a clean bill of health.
Thank you to all my friends and family who have been sending me good vibes, thoughts and prayers and the folks who have been talking to me daily via phone or instant message to help keep my fears at bay. And thank you to my wonderful parents who drove to Kentucky in the dead of night, through high winds, rain, sleet and snow (seriously!) to spend time with me when I was at my worst. And finally, I must acknowledge Mr. Husband for being the most patient, amazing caretaker I could ever hope for, and serving as my health-advocate when the medical system was giving me a run-around. Love to you all!
Now to rest. Computer work is REALLY hard without my vision and I’m tired of looking at font blown up to 24 pts!
Note: Research information for this post was taken from the Mayo Clinic’s web site. This is a great site if anyone wants to read further on my conditions.