Musings of a Medical Zebra

Archive for the ‘After Diagnosis – More Symptoms, Complications, Etc.’ Category

Making Progress

I have been seeing a new doctor in Chesterfield since March. Over the winter, I suddenly gained 15 pounds. I knew my diet wasn’t the problem, but I wasn’t sure what the problem actually was — my internist wasn’t sure either.

I found out about  my newest doctor through word of mouth. He had helped a fellow EDSer with sudden weight gain. Her situation sounded very similar to mine. I decided to make an appointment.

I am being treated for a number of health issues that he diagnosed via blood and urine tests. Apparently, the weight I had gained was fluid. The treatment I am receiving has enabled me to lose the fluid — apparently I have been retaining fluid for years, it has only recently gotten worse — and gain muscle over the past seven weeks. My doctor is happy with the progress I have made thus far, and so am I. I will continue to improve as the weeks pass. All the fluid I have gained recently and the fluid I have been carrying around for years will be gone — hopefully by the end of June.

The biggest relief for me is that my heart has improved. The fluid retention made my clicking heart valve even louder. As the fluid has left my body, the click has gotten quieter. More details to follow at a later date…

Tired

Tired — that word sums up the last several months. Fortunately, I have a new sleep specialist. Not only is he a great doctor and a nice guy, but he also has an interest in EDS. At my first appointment, we spent 20-30 minutes just talking about EDS — the types and their manifestations.

When he was in medical school, EDS was still classified using Roman Numerals. For him, Classical EDS was split into two types — EDS Type I and EDS Type II. Now it’s one type and called Classical EDS or cEDS. Similarly, Hypermobility EDS was EDS Type III and Vascular EDS was EDS Type IV. They are now hEDS and vEDS, respectively.

Of course we didn’t just talk about EDS. The bulk of my time with him was spent learning about the various drugs that can be used to help me sleep, and those that can be used to keep me awake. Unlike my previous sleep specialist, my current doctor understands the most important reason for me to remain alert during the day  — so that I can drive, thus maintaining a certain level independence.

Currently, I’m taking a drug to keep me awake during the day and a couple drugs to help me to sleep at night. Though I still have a few nights a month where I am only able to sleep for a couple hours in a row, I would say that my ability to stay asleep has drastically improved. My level of alertness during the day has made some improvements as well, but not in proportion to my sleep. I still spend about half the week too tired to make it through the entire day without a 2-3 hour nap.

I meet with my sleep specialist again in February.  Perhaps he will have more suggestions, which will lead to further improvements. I will keep you posted.

Farewell to the Sleep Specialist

After a bit of a discussion, my sleep specialist prescribed Provigil at my last visit. I started with a 100mg dose. It helps for a few hours and then stops working. He bumped me up to 200mg and it doesn’t do much more — just makes me jittery. I called him to mention the jittery feeling from the 200mg dose and to let him know that it doesn’t do much more than the 100mg dose. His nurse returned my phone call this morning.

My sleep specialist says that his hands are tied until my pain and stomach problems are under control.  He said when I can sleep through the night, he can help me. Until then, there isn’t anything he can do. *sigh*

I explained to him at my last visit that I have a gastroenterologist and a pain specialist. The gastroenterologist has not been able to fix my stomach problems and my pain specialist will not be able to make my pain go away entirely. I thought the sleep specialist understood that, but apparently not.

I have a follow-up with my internist in a few weeks. I will talk to him about this and see what he can do. I see no reason to meet with the sleep specialist again.

Sleepy…

I have been so tired these past few days that I have barely been able to stay awake. This weekend we will be traveling a couple hours from here to see my husband’s family. I am hoping I will be able to stay awake long enough to visit. We’ll see.

Next week I meet with my pulmonologist to talk about the results of my sleep study. I cannot wait.

I will be back…

soon. I haven’t been feeling well recently.  As a result, I’ve been doing a very poor job of keeping up with this blog. I will try to post an update in the next few days. Hope to see you then.

Exhausted

I’m exhausted.

Update

Much has happened since I last updated this. I went to Cincinnati to see an EDS specialist; I have a cardiologist; I started aquatic therapy; I have a copy of Dragon Naturally Speaking; I made two pies; Danny mowed the yard at least once; we visited our families twice; I ordered a couple pairs of shoes from zappos.com; and we’re awaiting a new dining room table from Pottery Barn.

I think I am most excited about the new table. It will be so nice to have enough room to seat more than four people. I am certain that Martha would be pleased as well.

Next to the table, starting aquatic therapy is relatively high on the list of exciting things since my last post.  I find it exciting because it’s  an opportunity to get stronger, and relieve some pain in the process.  Unfortunately, it’s going to take a fair amount of time before I feel some pain relief. While I’m excited about it on one hand, it’s hard for me to stay motivated on the other.  This is unusual for me. Typically I’m highly motivated, even when the task doesn’t directly benefit me.

In this particular case, the task — therapy — seems to be having a negative effect. I realize this is likely temporary, but the pain in my back has increased to a level I’d call severe.  I just want it to go away, as it is stressful and exhausting. Regardless of the pain it causes and/or my level of motivation, I will stick with it. I can’t be sure of its effectiveness otherwise. Wish me luck.

OT

I was released from occupational therapy today. I wish I had been released because I made significant progress — or any progress for that matter. My hands are still quite painful — I’ve lost most of the muscle in them (atrophy). I  have tendonitis in my wrists, forearms, and my right shoulder. I’m going to continue with my exercises.  Hopefully, with time, I will make some progress.

In the next couple of days, my TENS will arrive. It should help me to deal with the pain — in my hands and elsewhere in my body. Yay!!

E Day

Today I had an upper endoscopy. If you’ve read some of my previous posts, you already know that I have stomach problems.  I’m nauseous most of the time. I vomit off an on, for hours at a time, and my stomach hurts more often than not. My gastroenterologist decided to do another endoscopy. The last one I had was three years ago.

Today’s endoscopy yielded similar results.  My sliding hernia is still there, and my lower esophageal sphincter was still too floppy. The only thing different was the color of my stomach lining. This time it was red. My doctor took several biopsies of my stomach. He did that last time too. This time he biopsied my small intestine as well. The results of that stuff will come back in a few weeks. He expects everything to be fine. I seen him again on the 30th to discuss what to do next. He thinks the problem could be neurological, but said he might recommend another pH test — one that would tell him if I’m having reflux that’s not coming from my stomach (bile reflux). I see my internist on the 23rd to discuss my stomach as well. I suppose I’ll have more news at a later date.  For now, my stomach is unhappy about accepting food and I’m fairly nauesous, but otherwise okay.

Where am I now?

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.

ABC News Article About Cluster Headaches

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