Fall 2011 - In Pursuit of a Diagnosis

That end of summer/ early fall, I had my first appointment. At this point, I had made a list of anything that could possibly be a "symptom" and when I first noticed it. I gave it to the doctor, and he said, "This is only a 15-minute appointment. I can't help you. You need to reschedule for a physical. There seems to be something systemic going on." He prescribed me a steroid for the rash - a six day supply. The steroid made me feel so much better. The soreness was gone for the first 2-3 days! There had to be something wrong because the steroids helped. In discussing all of this with my family and friends, the "auto-immune" word popped up frequently. While I waited for 2 weeks to see my doctor with a physical appointment, I turned to the internet. I searched "auto-immune disorders" and found a list. About the fourth one down was Dermatomyositis. I selected it because of the prefix since I had a rash. At this time, I was red all over my face and chest (in a V shape on my chest). In reading the description, it seemed to fit me to a T. The more I looked into it, the more I was convinced this is what I had, and the more scared I got. People's accounts of it are not comforting!! I printed out some info and took it with me to my physical. I had not been to see my general practitioner in 4 years, so it was time for a physical anyway. After 45 minutes of the routine stuff, I finally got the courage to tell my doctor that I really had not been feeling well and told him about how my muscles were hurting and how hard it was to get up. He said, "Let me guess, you think you have some sort of muscular disorder." Yes, yes I did think that. He patted me on the shoulder and said, "I think you are jumping the gun a bit here. This is very rare. I have only had two patients in my whole career have this. You don't have this. I will run some extra tests, but you don't have this. You need diet and exercise." Hello?!?!? What was swimming daily for 5 weeks? He did get me a referral to a dermatologist for the rash. My appointment was in 2 weeks. My husband was mad I didn't get more steroids. During this two-week wait, I was starting to feel worse daily. My arms and legs hurt. I went to the dermatologist who asked me what was going on. He looked at my knuckles under his hand-held microscope and then asked me if I was feeling OK. I started crying because I was indeed not feeling OK and because it sounded like he knew something was wrong, so I was feeling some relief, too. The horror stories I had read on-line had me thinking that I may never get diagnosed. He took a skin biopsy but told me that his initial thought was either Lupus or something called Dermatomyositis. I then told him about my last doctor's appointment and how that went. I wept for about 15 minutes. Relief and sadness about the journey I was embarking on. My husband was again mad that there were no meds given to me. Meds would distort any test results. The biopsy came back positive for an auto-immune disorder. I was referred to a Rheumatologist/Immunologist. The guy had great credential but his office voicemail system was messed up and I couldn't get in touch with this office. Meanwhile, the days were ticking by. I got an appointment with a different rheumatologist (for a day two weeks away), but he was older and had to be close to retirement, so I wasn't sure I wanted to start this journey with him. Thankfully, the first guy's office finally called me - they had had a cancellation and I could get in next week! Again, I was getting worse daily and was scared about how quickly I was going downhill.