You have GOT TO listen to this! Well, not really, but I did.
Utah seems to be the leading edge in docs who find it easier to dole out a psychiatric diagnosis, rather than treat myasthenia gravis. There is a woman I met in July that is going through the same nightmare as the woman in the interview. She has MG, the docs undiagnosed her and she has been in critical condition for a very long time because they are withholding MG meds. They claim she has conversion disorder, not MG. A person would have to be really, really crazy and talented to fake not being able to breathe!!!!! I doubt there are ANY people on a vent because of mental illness on the part of the patient…..but the doc’s mental state is a whole other matter.
Because I have had MG for what seems like forever, and because I have been on MG support groups and read up about it, I feel like I know way more about MG than the average neurologist. Since MG is a rare disease, some medical people NEVER see a case in their lives. If you look up worst case videos of MG, it’s how we look in crisis, not every day! Some people aren’t wise enough to figure that out without first hand experience.
After being me all these years, and knowing people with the same symptoms, it’s hard to understand why some docs aren’t that smart. I have to keep reminding myself, it’s a RARE disease. I still think there’s more to the story than that, especially the cost of MG treatment, but that’s a whole other discussion.
Apparently there is a crisis in this country. I have heard from general medical advocates that when doctors don’t know what’s wrong with someone, more and more, a psychiatric diagnosis is slapped on and psychiatric meds are prescribed. In the warped minds of these evil, lazy docs, the patient doesn’t get better not because they aren’t given the correct treatment for the correct disease….but because they “aren’t trying hard enough” to shed their psychiatric illness. I am seething from what I am seeing people go through.
The woman I met in July has gone through years of MG treatment. She was looking vibrant and alive in July. As what happens to most of us with MG, she went into crisis. Now she is on a vent and being treated for conversion disorder instead of myasthenia gravis. You would think prudent people would give her Mestinon or IVIg….maybe not tell her and observe what happens! Instead, they are withholding that which she most needs. They are killing her 😦 This idiocy has got to stop!!!!!!