Feeling discouraged and too many specialists
I’m feeling so defeated tonight. While waiting for my Mayo Clinic appointment, I have continued to lose muscle mass in my arms and legs. I’m bruising easily and the night sweats are unbearable. I have a pain in stomach waking me at night and my oxygen level is dipping. My potassium level dropped and I was given potassium pills at the ER. My blood work came back with low lymphs and high hepcritin. I went to a neuroendocrinologist at Mass General today in hopes that he could at lease get the ball rolling as one of my first symptoms was high cortisol on a previous 24 urine. However I also had elevated 5HIAA back in December but my local Dr thought it wasn’t too out of range then. So I expected more from Harvard. More digging. More expertise. More action. He was only interested in my pituitary. When mentioned my other NET related symptoms he wanted to refer me to a GI doctor. I made a huge mistake. I thought even if we are not sure if it was a suspicious mircoandenoma with MRI he would at least. Run other tests. He said he is only pituitary and did nothing other than give my another urine and more of the same labs not a single NET blood test. He said Cushing takes months to diagnose. He ignored and didn’t even refer me to a NET specialist.No help. No scans. No Care. I don’t know what to do.