I have been searching the internet to find out other cases of people who have been ill with something that they have been unable to prove and been misdiagnosed, told they have conversion disorder, or mentally abused by someone in the medical community.

Dear Lily ... There have been MANY other cases of people with puzzling symptoms, difficult to diagnose precisely -if at all-. My sister died a week before Thanksgiving from the neurological complications of LUPUS - died in terrible pain she had suffered from for the past two years of her life.

Why was she in such terrible pain in this age of morphine pumps and more? Well, her husband, a physician, was convinced (sometimes encouraged by ignorant doctors not involved in her case) to label her as "crazy" - ie, that she was PRETENDING her symptoms to get attention from doctors, and that she was seriously addicted to pain meds.

So since she was still at home, he began cutting back her meds, dividing the doses into ever smaller amounts... and believed her increased suffering to be her play-acting.

To SOLVE her problems, he started sending her to a therapist. As time went by, he insisted that he accompany her to all her appointments (or send her adult daughter) in order to know just what she talked to the therapist about.

She had often, thru the years, said that she wanted her headstone to have inscribed the sentence, "I TOLD you I was sick!" Lupus is only one of the many illnesses that can confuse doctors for YEARS. Until she eventually developed the distinctive red mask, she was variously diagnosed with idiopathic bone-density loss which caused a compression fracture of a vertabra in her twenties, foot bones that would break when she climbed a ladder. She was diagnosed with RSD. She was suspected of having rhuematoid arthritis, to explain her extreme joint pain and loss of mobility. And so much more.... I don't know what they diagnosed the times when she would be carrying something heavy (bags of groceries) and you simply fall, flat out, without warning, flat on her face.

There are many illnesses that are difficult to diagnose - that have NO distinctive blood test or physical findings that can "prove" that you have it. I have spent years explaining to my parents that I suffer from PTSD and CFIDS - but since neither one can be "proved", they think I am pretending to be ill. Only if I had thousands of dollars of tests (when I had no insurance and virtually no income), then I was not "allowed" to have those diagnoses - even tho I had all the symptoms. And had the triggering conditions. AND, back then, the mere existance of the "yuppie flu" (as CFIDS was then called) was DENIED by most doctors. The patients were "faking it". My parents continue to believe I am faking it.

Also, PTSD was -for many years- thought to be only brought on by combat conditions -- the "shell shock" found in returning soldiers. Slowly, the diagnosis was extended to those who experienced other types of sudden and transient terrible PHYSICAL DISASTERS like your airliner crashing, your ship sinking, your building going up in flames, your home wiped out by a hurricane, a car wreck where you lost loved ones.

Now, for many years, it has been recognized that conditions of long-term abuse of children - and not just beatings, scaldings and cigarette burns, but also sexual abuse and emotional abuse, verbal abuse and social deprivation cause Complex PTSD which is associated with a large percentage of those with Borderline Personality Disorder.

And has now become recognized that Complex PTSD can happen to adults, too. Victims of abusive relationships, members of cults, victims of multiple losses - marriage, income, employability, children, social standing, social stability, extended social support. But no matter what causes it, no matter what age it starts, there are distinctive physical symptoms.

So keep your head up, seek support, educate yourself, and don't give up. Seek time with a therapist, too, to help you deal with the crazymaking of doctors who can't find anything or those don't believe your complaints. Stay strong. You are not the first and you won't be the last!

Hugs, Theresa

Delayed diagnosis and misdiagnosis are very common in Celiac Disease.
http://jccglutenfree.googlepages.com/delayofdiagnosis


As others have said, though, misdiagnosis or missed diagnosis is very common. For example, I was dx'd with BFS, BPPV, idiopathic PVC's, and had a wide ranging symptoms...but eventually I found all my symptoms were related to a B12 deficiency, and 95% of my symptoms resolved after correcting it. All of my idiopathic, benign, and somatic conditions disappeared.

My advice to those who remain undiagnosed and want to find answers is to keep on searching and networking with others who share like symptoms~ on forums like this!

Cara