Limpy,

You mention using a CPAP and having to take Xanax to tolerate it.

Are you still having breathing difficulties?

Are you still taking Xanax?

Do you still have a CPAP or did they change it to a BiPap?

I am asking this because it makes no sense to give a patients with neuromuscular disease a respirator device which requires breathing against resistance, with very minimal pressure support. It's not surprising that you found it hard to tolerate, it's not surprising that your condition further deteriorated with the combination of a CPAP and muscle relaxant.

As to your story. It is unfortunately not rare for patients with neurological disease that don't fit the book to be treated in that manner. I think this kind of management is forbidden to be used against war prisoners, but seems to be OK for treating those villains who dare to not fit the book.

You were very fortunate to have such a wonderful neurologist and a positive antibody test. I hope you will be able to put this behind you soon.

modern neurology and modern psychiatry have unfortunately created together a black hole of ignorance, prejudice and deceit. Very few neurologists and psychiatrists had the courage to go against this and they unfortunately had very little influence on this dangerous trend. In fact much efforts have been put into proving them wrong.

In fact the DSM-5 requires nothing but the ignorance of treating neurologist (or the entire field) in order to make a psychiatric diagnosis with serious ramifications. Your story and my story and many other stories of patients (some who may have not lived to tell their story) prove how serious and dangerous this is.

Physicians in other fields are not aware of this and fully trust the judgment of their colleagues, thinking that they obviously have data to support this. They are reassured that the patient has no serious medical condition and just needs a pat on the head and they gladly join in. Giving unsuspecting patients tranquiliziers (which are relatively contraindicated) and other psychiatric medications is quite common, sometimes with horrific consequences.

I think that patients with neurological symptoms given a psychiatric diagnosis, should politely ask what it is based on, what is expected from the treatment they are offered and what are the possible risks (given the fact that there is a possibility that they have an unrecognized neurological problem and what could be the effect on it), they should ask that everything will be clearly documented in their chart (including description of potential risk and potential benefit of the offered treatment), they should ask for a copy of this letter and also request a second opinion with a psychiatrist of their choice.
If they are having serious and potentially life threatening symptoms which are attributed to emotional problems, they should ask that this be clearly documented in the chart-for instance-patient having episodes of severe breathing difficulties, but we believe that this is due to emotional problems and discharging her home. The patient should also ask what he/she should do if their condition further deteriorates while at home.

It's time physicians start to take full responsibility over such decisions and pay for the consequences. I have everything documented on my chart, but I am one patient and can't fight this alone. Even if I write a book and put copies of those medical documents it will not change much. At the most people will say that this is a "rare" case. If there will be more and more stories like this which are fully documented it will become hard to ignore.

It doesn't make sense that in the 21st century patients will be treated like witches in the middle ages, just because of the horrible sin of having a rare/unusual/not yet described/ illness. No diagnosis does not mean no treatment and definitely does not mean freedom to torture.