Hi everyone, Has anyone had an esophageal manometry test that was abnormal? I had one recently and learned I have severe motor dysfunction. Food has been getting stuck for 9 months, and I often feel burning immediately upon swallowing. The test revealed how weakly my muscles work to propel the food down the esophagus. The majority of the time I swallow, nothing happens. My GI doctor said the results almost exactly resemble scleroderma changes, just not quite. I have also been told I have scleroderma-like changes to my hands. I had EMG/nerve testing this week that was essentially normal. There is no nerve damage to explain my weak fingers. The neurologist said it's from a connective tissue disorder (he tended to doubt polymyositis). The GI doctor said the changes to my esophagus are permanent. Has anyone recovered esophageal function? Thank you all. Blessings to everyone. Kristen

Hi Kristen. I had esophageal dysfunction for quite a while with my ASS. I was told by my neurologist that it can be normal, as polymyositis can affect EVERY muscle in the body. I still have minor issues, but as I got better treatment for my Ass, it did in fact improve, although it is not perfect. Your weak fingers could also be the myositis. Again, according to my neurologist, who is my lead doctor for this, ck levels are just an indicator, but muscle weakness can still occur without raising ck levels. That is the biggest problem with this disease, nothing is "normal" yet so much can happen. I have also learned that once a person has an autoimmune, other autoimmune disease (like scleroderma) are more likely, or possible. God Bless and Keep up the Good fight Wayne

Kirsten, Like both yourself and Wayne I too have the esophageal dysfunction from ASS. This was discovered after my Rheumatologist referred me to a Speech Therapist who did a Modified Barium Thoroscopy and discovered that the weakening muscles no longer formed a vacuum seal allowing food to run into the sinus cavity as well. This disease is unpredictable at best though it appears we all seem so share a common set of symptoms at times. As for CK levels, from what I can tell, with ASS they're not a very good indicator as I've had a number of relapses while maintaining CK within the "normal" range. My Rheumy out this down to the way the disease affects protein transfer within the muscles. Stay strong, Jason.

I too am experiencing esophageal dysfunction and just make sure I have water close by when eating. I often wake in the night choking on my own saliva (yuk) and have to cough to get clear. Interesting about CK levels. I thought with my reduction to the mid 3000's last week was me getting better, but if that is not an indication of the holy grail (remission) what is? The is surely a shit disease to have. I still have not been told what it is in the investigation that allows one to be diagnosed with this disease. Is there something in the blood or is it the symptoms, a combination of both? What is the definitive indicator that determines it is this disease and nothing different? Sorry folks probably stupid question, but I am still very confused and need more education on this.

The way my rheumy described it to me is that they don't know what causes it, and the only two things they know for sure is that it is not hereditary and it is not contageous. And it is the group of symptoms that makes it ASS. The blood work tells you which antibody has run ammuck, and the muscle and lung issues, as well as hand issues (mechanic's hands, rennaud's syndrome) (I'm sure I messed up the spelling on that) all make up the disease. If you haven't read the article from the Cleveland Clinic about this, its all about the combination of symptoms that need to be looked at as a whole in doing the diagnosis.

Lildreamer, Your rheumatologist will have made the diagnosis based in the antibodies present in your bloodwork which I'd imagine showed the presence of the JO-1 Antinuclear Antibody. Cheers, Jason.

Thanks for the replies. This community is great. I appreciate the information and support. I hope everyone has a good day. Kristen