GERD or something else

[Hummerlady555]

I had severe GERD two years ago.  I had Nissen Fundoplication surgery and was symptom free until recently.  My pH study was negative but symptoms had disappeared during the 24 hour monitoring.  I began to lose weight at the rate of .5 to 1 pound a day.  My gastroenterologist was very concerned.  A STAT x-ray didn't show a blockage. He ordered a Gastric Emptying Study.  Again, my symptoms went away so the test was negative. I was doing well for 4 days but now the stomach pain is back. It hasn't spread to the esphagus or intestines again.  I am really wondering what this is now.  Maybe it's not GERD. Can someone help me sort this out.  I'm confused.  I have a long history of esophageal spasms due to my brain problems. My rheumatologist suspects CREST syndrome as well but I don't understand the symptoms coming and going so abruptly like this. I hope my doctor doesn't think I'm malingering.

[Flycaster305]

Do you have access to a teaching hospital?  It sounds like you have a very complicated problem and need expert care.  Best wishes

[Hummerlady555]

I have cerebellar atrophy-shrinkage of the cerebellum-due to radiation treatment when I was an infant for non-cancerous tumors on my face. The radiation damaged my cerebellum so as I age, more and more organs in my body do not function properly.  Almost every organ spasms as do my skeletal muscles.  Most problems are neuro-genic.  I seem to be one of a kind so answers are in short supply.  I'm searching for some direction because the doctors are giving up. For GI motility I am on Amitiza, Polyethelene Glycol (Miralax), & Benefiber. CREST Syndrome is a new diagnosis.  I'm not sure if it's just an educated guess or I really have that.  This is my first time posting on this website.  

[selmaS]

HI...I am not sure what might be going on nor do I understand what u mean by "brain problems"...would u mind elaborating?......
We r not drs in this forum...only other people like urself, sharing what we have learned  with our own GERD experiences...we also offer support where we can.....


If ur issues r related to ur CREST syndrome, have u been put on meds for the motility issues?

"selma"