Thank you so much for your post. I did a Google search last night for the criteria for AS syndrome diagnosis. What you wrote is what I found: the diagnosis should be AS syndrome if you have the antibody. When I first tested positive for Jo-1 last fall, I researched it and came across AS then. I read that Jo-1 is exclusively seen in PM and DM. Because of my leg weakness, the rheumatologist diagnosed me as having Jo-1-positive PM and started prednisone and CellCept. I've recently tapered off the prednisone.
The rheumatologist has insisted I do not have AS. She did say my hands resembled mechanic's hands, and my neurologist said that, too. But then she repeated I don't have AS. She believes a patient must have documented myositis as well as ILD to have AS.
I am seeing her again in 2 weeks. She's at Stanford, which has probably intimidated me into thinking she's right about what she tells me. :) She did present my case to grand rounds -- and the collective rheumatology decision was that I had a neuromuscular disorder and was probably getting scleroderma. I think they're stumped because my MRIs and EMGs have been normal. I read last night that AS patients can have normal EMGs and MRIs yet still have weakness.
I've been working with a hand PT since January because I was losing so much function. I can now carry a coffee cup for 15 minutes without having to switch hands or grip it in the crook of my arm, pressed against my chest. So I do see improvement. The hand PT has been puzzled by the weakness in my pinky fingers. The EMG I had in March said everything was normal. The hand PT repeatedly requested my EMG report and finally got it this week. I saw her Thursday and got to see the report. My deltoid muscle had something called short-duration MUAP, but everything else was normal. The report said that was the only myopathic finding. So is that normal?
The other crazy thing is that the doctor who did the EMG didn't test my ulnar nerve along the pinky side of my hand, where the weakness is. I showed it to him. The introduction to my case on the EMG report says I have this problem. He tested the ulnar nerve near my thumb, where it's not affected. So the hand PT says it will need to be repeated.
I'm so frustrated by this whole endeavor. Why can't things be done correctly? And when my rheumatologist presented my case to grand rounds, she didn't tell them about my esophageal motility problem, which we had learned about two days earlier. She somehow didn't see that message from the GI doctor. I had made so many phone calls trying to make sure she knew. The GI doctor even went upstairs (since they're in the same building at Stanford) and spoke to her assistant. The assistant called me to refer me to the scleroderma-genius dermatologist at Stanford and said, "We know you got your esophagus results today." How much more can I do as the patient?
Enough venting. I feel better. :)
I also read last night that AS can ruin the motility in the distal part of the esophagus, which is exactly where mine has been lost. I have closer to normal motility in the proximal esophagus (or the top 1/3, near the throat). Food does get stuck in my throat still, but the lower part is really a problem now. I can't eat sandwiches, for example. My shortness of breath is linked to food being stuck in my esophagus. Last week I had a sudden fast and irregular heart beat for 10 minutes. It was 147 on my BP machine. I'm wearing a heart monitor now. The PCP said last week that probably my esophagus had a spasm, and that sent the wrong electrical activity to my heart. I hope that's all it was. Does anyone have this?
About the skin biopsy (and sorry this is so long, but Kelly, you're right that we need to share our information), I read that photosensitivity in AS can cause a rash seen in lupus or dermatomyositis. That's exactly what my biopsy was. Here are three papers I read:
Does anyone have experience with UCSF rheumatology?
Blessings to all. I'm deeply grateful we have each other.