Archive for the ‘After Diagnosis – More Symptoms, Complications, Etc.’ Category
Where am I now?
February 15th, 2009 Posted 6:34 pm
If you’ve read my first couple of posts — the stuff in the “Before Diagnosis” area — you might be wondering what’s going on with me now. The following should help bring you up to speed. Keep in mind that not all of it is related to EDS.
Sinus Stuff
In February of 2007, I developed a sinus infection. It was treated with antibiotics. A couple months later, another infection popped up. It was also treated with antibiotics. The next month, I had yet another infection. It was treated as well. In late August, my internist decided to send me to an ENT doctor. That doctor recommended endoscopic sinus surgery to straighten a deviated septum, remove some bone spurs, and carve out a wider path to my osteomeatal complex. (This sounds painful, but it wasn’t. It didn’t hurt at all, even without pain medication.) I had the surgery in October. I can breathe better thanks to the surgery, but it didn’t help with the infections.
My internist eventually sent me to an immunologist, thinking an immune deficiency was to blame for my frequent infections. All the tests my immunologist ordered came back normal. My immunologist tried to treat the infection with antibiotics and then steroids — still no luck.
My internist told me that I should get a second opinion from another ENT doctor. The new ENT doctor saw the green drainage and put me on antibiotics for over a month. The infection went away for a couple months, and then came back. I still have an infection now, and I have flare-ups from time to time – probably every 2-3 months. My internist thinks there still could be something wrong with my immune system – something rare. If the flare-ups continue, he wants me to call my immunologist and request that she do more testing.
Lung Stuff
In December 2007, I woke up in the middle of the night with severe pain in my chest. My doctor sent me to the ER. The ER doctor ordered a CT scan, among other things. The CT scan showed bilateral pulmonary nodules. (Nodules are small growths. They can be benign or malignant.)
I now have a pulmonologist. He suggested that I do chest CTs for an additional year – two years total. The scans are done every six months. The hope is that two year’s worth of scans should be enough to time to ensure that the nodules aren’t malignant.
Since I have had episodes of shortness of breath and chest pain, my pulmonologist ordered some pulmonary function tests. I have since been diagnosed with asthma.
Stomach Stuff
I mentioned stomach problems in one of my first posts. Unfortunately my stomach has gotten worse. Despite taking Nexium twice a day and Carafate four times a day, I still have acid reflux and nausea. I’m nauseous just about every day at some point or another. Once or twice a month, I wake up in the middle of the night with my heart racing. I always head to the bathroom because I feel extremely nauseous. Sometimes I throw up for hours while sitting on the bathroom floor next to a trash can, too weak to even move. Other times, I just sit in the bathroom – trembling from the sweat, waiting to throw up. The day after these episodes, I usually feel too tired to do anything other than sleep.
I have a gastroenterologist. He did an upper endoscopy three years ago and found a small hiatal hernia. He ordered a gastric emptying scan last April. The results of that test were normal. He ordered a 24 hour pH test last month. Even though the pH test was fine, it doesn’t mean I don’t have reflux. It just means that the test was performed on a day that I didn’t have reflux. I wasn’t surprised by the results at all. The day of the test, I felt pretty good. My doctor warned me that the results might be negative, so actually neither of us were surprised. Since the pH study failed to yield any useful results, I had another endoscopy. It didn’t reveal anything significant; my stomach looked pretty much the same as it did four years ago.
Head Stuff
I used to suffer from migraines. They went away mid-way through college. Two years ago, I started to have headaches again. These headaches were different, though. The new headaches were much more painful — probably the worst pain I had ever experienced.
It felt like someone was stabbing a hot poker into my eye and an ice pic under my cheekbone. At times, the pain would get so bad that I’d vomit. The pain would last at least an hour, and then return every half hour or so for several days. Last year, they became more frequent. My internist diagnosed me with cluster headaches and prescribed high flow oxygen. I now have an oxygen concentrator. It helps tremendously. (I’ll provide some info about cluster headaches at the end of this.)
Skin Stuff
My skin is more fragile than it was at the time of my diagnosis. If I am not careful about how I open up a bottle of water, for instance, my skin will tear. I also don’t heal as well as I used to. If I get a small scratch, it can take a few weeks to heal. When it does heal, it sometimes scars.
Joint Stuff
I have osteoarthritis in some joints and tendonitis pretty much everywhere. I also have dislocations daily. My hands seem to cause me the most problems. On my best days, they hurt constantly and I have to limit what I do with them — typing, kitchen tasks, etc. On my worst days, they’re pretty much useless. My knees and hips also cause me significant pain. On days when we know we’re going to be walking a lot, say we go to the zoo, we’ll bring my wheelchair along. I still feel weird riding in it — mainly because of all the stares I tend to get — but it makes our trips much more enjoyable.
Currently, I have a torn rotator cuff. This is likely the result of a shoulder dislocation that occurred while sleeping. I also have a fractured tailbone. I slipped on some ice back in December. I am still in a fair amount of pain from the injury. I cannot sit on my tailbone, so I can’t drive. I’m hoping I’ll improve in a couple months, so I can get back to driving again.
In addition to the injuries listed above, I have costochondritis and the right side of my ribcage is shifted slightly backwards. Occasionally, my chest will pop. I cannot only feel it, but I can hear it. Usually the popping occurs when I turn over in bed. Occasionally, it will occur while standing. The pain is severe enough, that if it happens while standing, I have to sit down until the pain subsides.
Other Stuff
I also suffer from daily fatigue, which can be extreme at times.
In 2003, I developed lesions on my tongue. My dentist diagnosed me with geographic tongue. Since then, the lesions have gotten much worse. Most days, my tongue us sore. Occasionally, it’s actually painful and bleeds. The majority of my tongue is covered with lesions on a typical day. My internist wonders if my tongue issues are related to an immune disorder.