Ally, Thank you so much for posting that information!

I would bet that Rach's docs are withholding valuable information from her as well. It makes me so sick that doctors are now doing this. It's a "trend" to keep themselves from being sued when they dismiss a patient's concerns or say they're fine.

My neuro from now eight years ago withheld a positive AChR antibody test from me. He knew about it when we had an appt. And when I requested all labs, they didn't send me that one. Coincidence? No way.

Ally, those tests are HUGE clues. It makes me sick. I don't know what your state statutes say but the ones in my state are VERY clear that they cannot withhold your records. Nor can they not tell you about them!!!! You can call your local representative or state senator about it or look it up on your state's website. Consulting a lawyer might not be a bad idea either, since they already tried to get you to sign that waiver.

Allen, What a generous offer. Where are the billionaires when patients need them? Or the ethics.

I hope you're feeling a bit better, Rach.

Annie

Ally, You snuck in more info before I could post! I agree with you that not doing a biopsy was ridiculous. Mitochondrial disorders are not rare. Neither is CMS in Northern Europe.