Musings of a Medical Zebra

Archive for the ‘Before Diagnosis – Signs, Symptoms, Etc.’ Category

Clues Continued

Physical therapy eventually helped me to become almost pain free in my left hip. I felt pretty good for several months — through the Spring or Summer of 2004.  My relief turned out to be short-lived.

Once Fall rolled around, my knees started to hurt. Since the pain was in both of my knees, my doctor decided to test me for rheumatoid arthritis. The test came back negative, and I was sent to physical therapy again.  The therapist diagnosed me with Iliotibial Band syndrome.  Therapy was beneficial, but I wasn’t anywhere near pain free at the time of my release.  I simply accepted that I was just going to have to live with knee pain. I relied on Ibuprofen a few times a day, several days out of the week.

Not long after my release from therapy, I experienced significant pain in my wrists and hands. It was late November and I decided to make some gingerbread cookies.  I didn’t have a stand mixer at the time, so I stirred the dough by hand. If you’ve ever made gingerbread cookies, you already know the dough is very thick. If you haven’t, well now you know.

Two days after stirring and rolling the dough,  my fingers hurt so much that I could barely bend them, and my wrists felt broken.  I knew the pain was caused by stirring the gingerbread. I could see having a little bit of soreness, but not the degree of pain I was experiencing. As the days passed, my pain improved. It never completely went away, though.

I decided against calling my doctor this time around.  I  did some research instead. I had a hunch that all my pain was related somehow. I did various google searches in attempt to find a name for my condition with no luck. A week  or two passed, and I thought back to what the physical therapist said — the hypermobility comment.  I put that term into google, along with joint pain, and it came up with a condition called “hypermoblity syndrome.” It sounded close, but didn’t explain everything. I wasn’t sure if that meant I had one condition, or two conditions — hypermobility syndrome and something else. I did more searching and managed to come across some articles about Ehlers-Danlos syndrome (EDS). The more I read about EDS, the more I identified with it.

It took at least a month to muster the courage to print off some info about EDS and approach my doctor with it. I was a little hesitant about suggesting the condition because I didn’t want my doctor to feel insulted. I know that some doctors don’t appreciate it when a patient brings in information about a condition they think they have.

After figuring out the best way to approach her, I made an appointment. The discussion went much better than I expected.  She made an appointment with a geneticist. A month or two later, I was offically diagnosed with EDS.

The First Clues

I mentioned in my second post that I was diagnosed with Ehlers-Danlos syndrome (EDS) in March of 2005.  My symptoms, however, began many years prior. My first experiences with EDS occurred as a teenager. My left hip would occasionally dislocate when I’d bend over to pick something up and my shoulders would pop out when doing large arm circles in PE. At the time, I didn’t think anything of it. The dislocations weren’t painful, so they didn’t seem worth mentioning. Actually, I do recall one of the dislocations being painful. It occurred during my junior year of high school. I was lying on the couch studying, as I often did. My right arm was propped up and my head was resting on my right hand. All of a sudden, I felt my jaw slip. Realizing that something had just gone horribly wrong, I sat up and wiggled my jaw around. I couldn’t open it very far and the right side hung farther down than the left. I decided not to tell anyone about this experience for quite some time — actually it turned out to be a year — because I was more concerned about how my doctor would get my jaw back into place than I was about the pain. I kept picturing a large man yanking violently on my chin until I heard and felt a loud popping noise (and immense pain). It seemed like a better idea just to keep quiet for awhile.

That was the worst dislocation I suffered until Oct. of 2003. At some point during that month, I remember falling asleep on the couch. Normally, I sleep with a pillow between my knees. That night I forgot about the pillow and woke up with a dislocated hip. In retrospect, I know it was a dislocated hip. At the time, I wasn’t sure what happened. I just knew it was very painful. There was a constant burning sensation in my hip that lasted for several days. When the intensity of the burning decreased, I thought my hip was going to be okay. I didn’t see a need to visit my doctor. As the weeks went by, the pain lingered. I developed a noticeable limp, and my husband insisted that I buy and use a cane. I bought a cane that weekend and called my doctor a couple days later. I was diagnosed with trochanteric bursitis. I was given a prednisone injection and sent home with some pain killers/anti-inflammatories, Relafen. My doctor said that I’d need to get another injection if the pain in my hip didn’t go away in three weeks.

I left the doctor’s office and headed home. An hour or so later, it became difficult to walk on my left leg – the leg where I had been given the injection. My left knee didn’t seem to want to bend, and the pain in my hip had increased significantly. I relied on my cane heavily for about a week. I continued to take the Relafen for three weeks. I called my doctor because the pain wasn’t getting any better and because I had developed a new problem – I was able to eat less and I was nauseous most of the time. After looking around online, I was convinced I had gastritis –- stomach lining inflammation.

At my second doctor’s visit, I was supposed to get another prednisone injection. When I told my doctor about my new symptoms, she decided against the injection. She thought I had an ulcer and didn’t want to make it worse by giving me another prednisone injection. She sent me to the hospital for an upper GI and I found out that I had gastritis. Six months later and 25+ pounds lighter –- I was in so much pain that I could eat very little — my stomach had finally healed.

During the healing process, I was sent to physical therapy for my hip. My first visit with the physical therapist made quite an impression on me. As the therapist was evaluating me, she noticed that my joints were extremely flexible. This was something I had always known. The interesting thing to me was the term she used: hypermobility. I kept the term in the back of my mind, thinking it might useful somehow. Several months later, my instincts turned out to be correct.

To be continued…

March 17th, 2005

March 17th, 2005 is a day I remember quite vividly.  Yes, it was St. Patrick’s Day, but that isn’t why I am able to recall it so well. March 17th, 2005 holds significance to me because it was the day I was officially diagnosed with Ehlers-Danlos syndrome (EDS). With the diagnosis came many changes in my life. Well, that’s an understatement.  The life I planned for and the life I am actually living are very different.

If you were to ask me ten years ago what I’d be doing now, I would have told you practicing medicine.  Whether or not I made others aware of it, I wanted to attend medical school from the time I was in 3rd grade.  With my interest in health and science,  it just seemed like the career I was destined for.  As it turns out, I wasn’t actually supposed to be a doctor.  Instead, I’m supposed to spend a lot of time with doctors — as a patient.

This didn’t occur to me until recently.  I was doing career counseling with a psychologist.  My goal was to find something  I’d both like to do and can physically do — not an easy feat. One of the first questions the psychologist asked me was where I expected to be career-wise. I told her in medical school, or finishing up medical school.  It was at that point — when I said it out loud — that I realized I was never meant to be a doctor.  It’s still sinking in even now. I think that’s understandable. Afterall,  I didn’t miss out on the opportunity because of things I had control over – taking the right classes and getting good grades.  Nope. I missed out on the opportunity because of something I have no control over — something many people take for granted. I missed out on the opportunity because of my health.

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