Gi symptoms
Hi there,
38 yr old here and working with a rheumatologist and hematologist currently. The rheumatologist reported that I am developing symptoms of scleroderma, but have yet to reach the required cut off for a formal dx. In his words, we now wait and see what transpires. He has provided more answers for me than any other provider, so I am honestly thankful for him.
I have a several positive ANAs with one that showed an anticentromere pattern, extensive dry eyes requiring multiple types of eye drops and a brader’s patch nightly. The doctor and I have had two visits so far. One confirming a previous dx at the age of 15 of fibromyalgia and chronic fatigue syndrome, and another that provided a dx bilateral carpal tunnel syndrome.
Our next line of testing is to focus on GI symptoms i.e. dysphagia (which occurs daily for me with pills and dry textures) and to assess the presence of GERD. Previously I had never had reflux but over the last four months it is becoming more common. The question I have is if any of you with a dx experience intense abdominal pains. They are often sharp and shooting, to the point I guard my abdomen. At times when peristalsis occurs I feel each movement which causes much discomfort. Results of a previous colonoscopy have resulted in a dx of a tortuous colon as I “am such a small person there is no room in your abdominal cavity for your intestines.” True and unfortunate story. I follow a strict gluten free diet and practice veganism with an emphasis on a Whole Foods (dietitian by trade.) Yet, when in GI pain my appetite disappears completely as food equates to more pain and nausea. Praise zofran PRN.
Also have any of you also received a dx of cyclic neutropenic syndrome? I have been consistently neutropenic and have leukopenia for over three years. Hematology says it is due to early stage autoimmune disease and rheumatology wants to r/o the cyclic syndrome. Bone marrow biopsies point to no leukemia or production issues.
This has been a hard few years, with much being discovered in the last year. I’m feeling a bit overwhelmed with how complex my medical status is becoming and how quickly my life is changing as a result.