I am so sorry to hear how they treated you. That’s terrible and hurtful. Unfortunately, many, maybe most, of us with MALs have been treated this way. In the notes a couple docs wrote “anxiety” for me after they dismissed me. Anxiety has never been an issue for me. I was just really sick! Others with MALs have also been labeled with Munchausens and by proxy or anorexia nervous. Some have described medical kidnapping (multiple MALs people from same facility). It’s a real problem. Some docs want evidence for medical diagnosis but need NO evidence for psychological diagnosis, which they use as their wild card when they don’t want to admit they don’t know.
Patients must educate themselves extensively about MALs because many doctors don’t know about it. I’ve searched medical journals but the best MALs info came after surgery when I joined Facebook group “MALs awareness”. They have educational info in the files and learned more about comorbities such as pots, ED, dysautonomia, some of which explained most of the weird symptoms I had. I would recommend you join that before your next apt.
So glad you were assertive and asked questions. It’s hard to find competent MALs docs. Unfortunately, the newest info on MALs is not in the research journals, and that’s all they read.
The MALs awareness group has a list of doctors people have seen for MALs. Dr Hsu in Connecticut is the number 1 expert on MALs surgeries. They all love him!
I wish you well!
I should clarify that all the docs at Mayo were excellent. The ones I negatively described above were not from mayo and made up about 10% of all docs I saw. The majority of docs really care and try to help. It’s just that the ones who are not good are very hurtful when they mislabel and dismiss. Sorry for my negativity in the post above. But still important to advocate for oneself.