Currently waiting approval for Rheumatology physician referral

Posted by coaussiemom @coaussiemom, Feb 9 7:55pm

My situation is complicated and frustrating..trying to find answers and a diagnosis is like watching paint dry in the rain. Someone, please, if you have any input or have been dealing with similar issues, I would love some feedback and maybe a little hope.

I have been dealing with the unknown for over 2 years and still no answers. The word “normal” is definitely on my ‘don’t even say it’ list.
My symptoms started out minimal. November 2023-Nausea 3-5x day with or without eating. Mild constipation and mild abdominal pain with/without eating. Referrals to 3 GI doctor’s who were positive I just had GERD.
Then my appetite started to decrease as the nausea started to be more severe and option. Unintentional weight loss (40+ in 2 months), and a severe balloon like heaviness / pressure in my upper right abdomen that is constant and making it difficult to take deep breaths.
2 Endoscopies, Colonoscopy, gastric emptying study, abdominal/Pelvic CT and MRI, Dexa Scan, PET scan, Gallbladder removal surgery and numerous Blood tests.
Abdominal pressure continues to get worse, like a Charlie horse pain. Liver slightly enlarged, Breathing is more difficult and my body is getting more and more tired, weak and just worn down.
New symptoms that started to present in October 2025: 1-2x month flu like symptoms of body aches and fever. Lasted max 48 hours then gone like it never happened. I have always had cold hands feet, however now, from knuckles to tips of fingers, they are constant blue with occasional black and/or white tips. Severe swelling in hands (more left hand) and inability to bend fingers or grasp objects fully without dropping. Honeycomb pattern look on hands /wrist/arms , more and more discomfort, weakness and pain throughout.
Blood tests are not giving straight answers either. The only abnormal (High) areas are:
-Factor VIII Activity
-BUN/Creatinine Ratio
-Alkaline Phosphatase
-Alkaline Phosphatase Isoenzyme Bone
-ALT (SGPT)
-Rheumatoid Factor (RF)

Scans aren’t revealing anything ‘serious’ that corresponds with symptoms.. So after 3 GI doctors, Oncology , Hepatology, Urology, General… All my doctors are stumped and don’t know what is happening or why. I truly hope I get accepted and these doctors can dig deeper and find answers of some sort.

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@coaussiemom
This could be related to a hormonal imbalance. It would be a good idea to see an endocrinologist for further evaluation, including catecholamine, cortisol, and ACTH tests.

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