Pituitary macroadenoma vs myasthenia
I was diagnosised with a macroadenoma after having an MRI for muscle weakness and pain. 4 years later I am finally getting consults at Mayo. It's time for the tumor to be removed. But, still no explanation for the other symptoms. The doctors in Montana have come up with a seronegative myasthenia. They started me on mestinon, which does help with the extreme fatigue. But how can it be myasthenia without a positive EMG or blood tests? (I do have a droop in the right eye). I'm so frustrated and just was looking for others to talk with. I've had vitamin D levels corrected with supplements, had all the other vitamin levels tested. Had MRI's from head to toe. Even had a spinal for a MS panel (negative except some elevated protein levels). But I feel like hell. I was told "we believe something is wrong but until it's bad enough we can figure it out there's nothing we can do". I was even sent to therapy for possible conversion disorder. I trip, I have very poor fine motor skill, extreme fatigue and had caused me to quit one of my jobs, have lost all desire to try to do anything I enjoy (like fishing). This has caused terrible depression and had taken away my will to continue to live some days. I've been told because my tumor is non functioning this is not tumor related. The pituitary stalk is deviated and the tumor is trying to wrap around the ICA. Anyone have comments/suggestions or just a story to share with me? I would so love to find some emotional support by those with similiar stories. Thanks in advance.