I am currently taking 30mg mestinon every three hours and 20 mg prednisone daily. My local doc was aghast that they had abruptly stopped the prednisone, but since it seemed to have brought on the crises, he cut it back to 20 mg and started it back. He is supposed to be looking into getting me started on 3,4 Dap.

Another interesting note is that when I was originally tested for LEMS last year and my symptoms were relatively mild at the time, the test was negative. In January, when my symptoms were full tilt, the LEMS test came back strongly positive.

In your letter to them, you might want to write a series of numbered questions for them to address before writing out what you've learned from them ...

1. "Want to know where I got the VGCC antibodies?" I have no idea whether they think they're as easy to get as they think Mestinon is (getting Mestinon is no small feat), but it seems they'd believe even the most impossible dishonest or criminal act of someone around your age (whatever it is), if that person has difficulty breathing and swallowing. You want to know if they'd believe you could do that.

And then,

2. "Want to know why I didn't use them while I was there?" (A follow-up question tests their credulity a little more -- and I'm sure they'll respond "yes" after the first teaser if they take the bait at all ).

And,

3. "Well, maybe I don't have a way to get the antibodies. Does that mean when I didn't test positive for them, I had what you said I had and then when I had the antibodies but the same symptoms, I had a new disease, that is, what the other doctors said I have?

So I have both psychosis and LEMS?

And when the antibodies don't show, I have whatever you said?

But when they do appear on tests, the same symptoms mean something else?"


And then, in anticipation of their response to number three, write out what you've learned:

If you ever get diabetes and you have a normal sugar (especially if you get normal sugar twice), you're never going to test for it again and you are going to stop taking your meds forever. Same thing for blood pressure. And same thing for cancer. Tell them that's what you've learned from them about how you are supposed to treat diseases you have. Ask if you learned the wrong lesson from your stay.

(Why that? Because you might imagine that they'll pull you off treatment and say you're controlled if someone sends you there again, you're terribly symptomatic and you get negative results.)

Frankly, I don't see much else to say to them. I'd only want to know what they'd respond to those taunts.

One more thing -- you'd specifically ask for the doctors' responses. Because you want to know what their "expertise" entails which completely defies common sense.

And I think you have to have written instructions somewhere not to route you there in case of emergency ...

Fortunately, the Lems test had been performed here at the local hospital 'before' I was shipped out to Emory, but I was unaware of it until I got back home.
So, if they were being truly diligent, they would have performed that same test and gotten the same positive results as they did here locally.

I just feel like there is no excuse for their negligence and their poor treatment of me. It wasn't that they could not get a physical diagnosis for me, they just decided to stop looking.

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.

Thank you for your support Dr Alice - from everyone.....

***************

The stories described are really pretty atrocious.

I personally think that that it would not help to get one ptotic eye open

Even if you lived with a psychiatrist and had sessions every other hour!

Nevertheless, if you leave the doctor´s office without a diagnosis, that is one thing.

But conversion disorder is a diagnosis,

So where are the specialists?


The last neuro I went to said that no, MG was progressive and remissions like mine did not exist.
So without being direct the insinuation was that CD would be the only alternative diagnosis
if I were to get weak again and not pass the Tensilon test. It was more like a threat than a plausible credible diagnosis.

It would have been nice to hear just one story from a patient with conversion disorder and muscle weakness
that has been diagnosed in a timely, efficient and respectful manner with a successful treatment program
managed by someone who actually knows what they are doing.

I would not be surprised if there is such a patient or even more than one.
Many times there is no effective treatment which alters the course of neurological diseases. The only treatment available is symptomatic and supportive care.

Think about ALS-with or without a diagnosis there is no effective treatment to alter the course of this illness.
You can send them home and tell them that their symptoms are caused by emotional problems.
Or: you can give them a wheelchair, help them arrange their house to fit their needs, provide respiratory support early on, help them keep leading a productive life etc. etc.

Guess what would be the outcome of the first patient as compared to the outcome of the second patient? The second patient will have a much better quality of life and will live much longer (this is supported by the medical literature).

You do not need a diagnosis in order to treat a patient with respect and do your best to improve their quality of life and prolong their life.

I can understand being reluctant to give immunosupressive treatment (which has potentially serious side effects) without a firm diagnosis. I can't understand easily giving tranquiliziers or other psychiatric medications (which have potentially serious side effects and risk of addiction) without having a firm proof that those are required. I can't understand neglecting a patient without a firm diagnosis.

I believe there are neurologists who do not see the diagnosis of CD as a reason to neglect or even punish the patient. I know there is at least one who thinks that such patients require treatment and support. He still used the term "functional neurological symptoms" (which has different meaning for different people and is a very deceiving term in my opinion) but I believe he does help at least some of his patients.

http://www.neurosymptoms.org/#/stories/4533053414

The problem with his approach is that it makes this diagnosis more legitimate, leads to less interest in trying to understand the underlying causes of those "unexplained" symptoms, but at least it leads to a more humanistic approach to those patients. It can be a step forward, or a step backwards (he was one of those who pushed towards the new DSM-5 category, which shows that he himself doesn't see "functional/CD as a true neurological disorder, or else why would it appear as a psychiatric diagnosis in a psychiatric manual?)

Also, his patients may be deprived of proper treatment and supportive care because he lumps them all under one category and gives them a "one size fits all" treatment.
For instance, an MG patient with normal test results who is diagnosed as CD would be treated with human respect but at the same time be encouraged to exercise, would not receive mestinon and similar medications and would quite likely receive tranquilizers and not respiratory support if required. This patient (mostly if he was met with disbelief and disrespect previously) may be satisfied, because he/she doesn't know better.

[QUOTE=alice md;957578]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.


I am no longer having breathing difficulties. What I meant by tolerating cpap, was being able to stand having a contraption strapped to your face while you are trying to fall asleep. The small dose of Xanax only relaxes me enough so that I can go off to sleep without being so aware of my discomfort from cpap.
They did put bipap on me at the local hospital and it was horrible in my experience. I could not keep up with the pace and it would be forcing me to inhale when I was trying to exhale. I felt as if my lungs would explode.
I am still using cpap at home, but did have to reduce the pressure slightly, because I was having a little difficulty exhaling against the incoming pressure while in the hospital. All is good with that now. Xanax does not seem to depress my breathing, only makes me sleepy enough to ignore any discomfort I may have.

I am sorry, but this makes no sense.

If you are not having breathing difficulties, why do you need respiratory support at all?
Xanax is a muscle relaxant, so it quite likely effects your respiratory muscles.
What you describe with the Bipap sounds like it was not properly adjusted. Quite likely both the pressures and the rate were too high and/or the Bipap was not sensitive enough.

I use cpap for sleep apnea. If I don't use it, I snore and wake myself up repeatedly and cannot get a restful sleep.
I have this problem regardless of whether I use Xanax or not. My oxygen levels fall without cpap, but not enough to warrant oxygen therapy at this point.
I have questioned my doctors about the use of Xanax, given its sedating effect, and they seem to be comfortable with using it as long as it will enable me to be cpap compliant.