Only strong result was the lowest vit D I have seen since 2007 at 29. Now of course the outdated table tries to suggest this is not a big deal but I know there is much change in the mill on vit D and this number is a BIG deal for me. EVen my Endo has ordered that I be above 42.

I had low BUN, elevated lymph, and a Beta element under the pprotein portion that is low. The lyme is not done yet. I dont expect it to be positive.

I know what I have. I be in better shape if my vit D was higher and the myostis is gone so that is my goal to work that area.

Have any of you ever had a doctor say to you why do you need diagnosis? I got this again from this neuro that did these tests. I guess the assumption is that as long as you are being medicated and in this case it is mestinon only why do you put yourself thru fighting for a diagnosis.

Annie59

I was questioned as to why I needed tests to get a diagnosis many times in the last four years. Or why I needed a name for the illness that was so badly affecting my life.

I actually have it in writing that they felt that no more tests should be performed on me as they would never get a diagnosis. The letter also suggests that somatization / conversion disorder should be considered.

However the last test I had on the 21st of January 2011 proved them all wrong and they had to admit that I was ill and have postural orthostatic tachycardia. I am still waiting to start treatment and it wont commence until 24th March when I see the consultant.

In my case I wasn't being medicated or treated by the medical profession. I believe that somewhere in my notes it suggests I have somatization / conversion disorder. I can't prove this as Dr's can hide behind the law (in the UK) which means they can withhold parts of your notes if they believe it could cause you mental or physical harm to see them. Basically they hide all their fu** ups behind that.

I can appreciate where you are coming from with your quest for a diagnosis, but I am envious that you are receiving treatment! The diagnosis of your condition means you can have a tailored treatment programme. Without it treatment would be akin to shooting fish in a barrel. Eventually you will get somewhere but it will take longer without the elusive diagnosis!

Rach

A diagnosis can be a two-sided sword.

The truth is that not all disease, not all possible side effect of medication, have been described or explained yet. About 1/3 of patients with neurological symptoms will not have a known diagnosis found even after extensive testing.

The mutual need for "diagnosis" puts both physician and patient in a "Procrustean bed", in which they both have to somehow fit those symptoms into some known disease.

This is exactly the place in which spurious diagnoses are created. Diagnoses that are based on very little evidence for their existence, are controversial, do not lead to any clear treatment plan or prognosis. Some are useful for the physicians (eg-conversive disorder, which puts the responsibility for the illness on the shoulders of the patient), and some are useful for the patients, as they finally have a nice Latin or Greek name, even if it doesn't always mean much.

If we are ready to accept the fact that a diagnosis is not an aim, but a tool to reach a treatment plan, which may be curative but many times (even in patients with a clear and obvious diagnosis) is mostly symptomatic or supportive, we will understand that what is really important is not the diagnosis, but the recognition and understanding of the illness and the way it affects the patient.

When a diagnosis is given to a patient with atypical signs and symptoms of a given disease, it may lead to proper treatment, but also the opposite-insistence on giving treatment that causes more harm then good, because this is what works in typical patients with this illness.

I once had a patient with acute leukemia, whose malignant cells didn't fit any known category of this disease. They resembled cells of one malignancy, and at the same time had many features of the other. So, instead of giving him the treatment I would give to a patient with "normal" leukemia, I gave him some mix that would cover both types.

He is now 8 years later, healthier then me. (and I hope he keeps that way). The lap-top I am using is thanks to him, as he is a computer expert and helped my find what would be the best for my disabilities.

A few years after he recovered, I found a paper describing a few cases with a similar type of leukemia. They were all given the standard treatment and none survived.

Possibly, I (and him) have been lucky, and possibly my innovative thinking was what saved his life. I will never know.


What I know is that it should always be kept in mind that the unusual presentation of the disease may also lead to unusual response to the commonly used treatments. And that giving a patient a diagnosis of a disease we know, even if his illness doesn't fit, is not always beneficial.

Although, my last attempt at trying to explain this to a neurologist led to him suggesting that I could have Munchausen syndrome, As for him, I could either have autoimmune myasthenia gravis or nothing at all. but I think this says something about him not me.

by the way the exponentially increasing law-suits against physicians that don't treat patients "by the book" make it harder and harder to treat patients in a more innovative approach, that takes into account their individual and specific features of their illness, and gives a very fertile ground for the large pharmaceutical companies to exert their influence of the practice of medicine.