Have Pain? Are You Crazy?

[tachyfor50years]

http://blogs.scientificamerican.com/molecules-to-medicine/2014/02/18/have-pain-are-you-crazy-rare-diseases-pt-2/#comment-727

[Freaked]

Great article. And I predict that the new, contraversial DSM 5 diagnostic criteria for somatoform disorder will cause problems for those with dysautonomia, and we might see more awful cases like Justina Pelletier's in Boston. As a former victim of the somatoform label and a scary psychiatrist (http://forums.dinet.org/index.php?/topic/24449-horrible-psychiatrist/), i think if I lived there I think I would picket that hospital until they freed her.

[looneymom]

Thank you so much for posting this. This is a very scary situation. The last time I took my son to our GP, he wanted me to take him off all his mediction. Our GP is not very supportive at this time and is refusing to look at the new testing that we have gotten back recently on my son. If my son ever gets in trouble with a severe infection, I will only take him to the hospital where his cardiologist is at, which is 3 hours away.

The pain issue is real and my son has been dealing with it for a long time. These doctors need to start looking beyond a conversion disorder. Too many kids are suffering with this problem. Tough love is not the answer. When the antibodies showed up on Tyler's last test, this helped to explained some of the pain issue. I have recently learned that High Cam Kinese can cause high Glutamate in the brain which in return will cause neuropathy problems. The high Cam Kinese was found in the Cunningham panel testing. I posted that research article under the neurotransmitter testing post in case anyone wanted to read it. It's in the last entry on that post.

This wrong diagnosis will continue as long as doctors are unwilling to search for the underlying cause. It pays to be an overly protective parent and thank goodness our cardiologist saw through this diagnosis.

Rachel

[Chaos]

Scary to think how many kids are being treated for psych diagnoses because they don't have parents willing to fight for their kids like you (and others on here) have Rachel. Same goes for adults who don't have the knowledge base to do their own research and find answers for themselves.

While I saw it happen all the time in the hospital, I fail to understand why docs are so quick to immediately play the "psych" card when they don't understand a patient's symptoms. There is no "proof" or "evidence base" of psychosomatic disease that they can show me. Why do they believe that occurs but they don't believe a patient's complaints who was totally normal one day and then suddenly has a list of symptoms? Just because they don't understand it, doesn't mean it doesn't exist and isn't real. Nearly all the diseases that once were labeled psychosomatic have now been found to have a physiological basis...MS, Parkinsons, schizophrenia, depression, to name a few.

I agree the DSM 5 Somataform disorder could be a real problem for all of us with dysautonomia, EDS, ME/CFS or any chronic disease that has more than 1 symptom and doesn't fit into the nice little box at your GP's office.

[Christy_D]

Before getting the POTS diagnosis for my son, we were told it was anxiety, depression, school avoidance, etc...I kept researching on line until I found doctors who could help us. We had to travel almost 10 hours to see those doctors, but they finally validated that it wasn't a 'mental' issue. Justina Pelletier's case is becoming National news. It is supposed to be on Megan Kelly's show on FOX news tonight and Glenn Beck had her father on his show this week as well. I just think that what is happening to them could of happened to my family. I 'doctor' shopped, of course until we found someone to help us. I knew my son was sick and not mentally making it up. I think they were accused of medical abuse of their daughter. Besides my son having MCAS and POTS, my daughter was officially diagnosed with EDS and OI and experiences daily pain. We could have easily ended up in the same spot as the Pelletiers. Thank goodness both of my kids are now over 18.

Scary stuff.

[Katybug]

There was a segment on the Kelly File on Fox News tonight regarding a 16 year old girl who has been taken away from her family by DCS in MA because one hospital dx'ed her with mito disease and another hospital dx'ed her with somatoform when they took her there for a second opinion. The parents decided to take her back to the first hospital for treatment and the second hospital called DCS on them because they disagreed. The girl is deteriorating because, for over a year now, the court will not release her back into her parents custody and is insisting on her being treated for somatoform and not mito. Even the insurance co was not contesting treatment for mito so how this ruling came down in the court system is beyond me. I can tell you this...it turned my stomach to hear this family's story and find out that this poor child is not getting the help she needs.

[Freaked]

Chaos, there are three main reasons, as far as I can tell, that docs resort to psychiatric diagnoses so quickly.

1, they see a lot of anxious people, and other people with mental or emotional difficulties. A lot of panic attacks end up in the ER.

2, They want to give some type of diagnosis, because they want to write something down on your discharge sheet. 'Anxiety' is nice and vague and easy to write. They don't want you saying they're not doing their jobs and didn't try to find out what was wrong with you.

3, as a senior in psychology, I can tell you that most medical doctors simply don't know that much about psychiatric disorders - they haven't studied them in great detail. They will often attribute things to anxiety or depression that simply aren't anxiety or depression symptoms; they have this idea that psychological problems can cause any and all physical symptoms, which simply isn't true. If they get a psych opinion, normally the psych will give you a better evaluation. If however the psych is a specialist in psychosomatic illness, as I was unlucky enough to get, and Justina Pelletier, some of them get very stubborn about this diagnosis because their reputation and the reputation of their particular area is on the line. Somatoform disorder is a more difficult disorder than anxiety to disprove, because it can be claimed to cause a lot of things, up to and including actual blindness. However it is more common that when docs misdiagnose psychiatric illness, a psychologist or psychiatrist will pick it up if the person is exhibiting symptoms such as exercise intolerance, which is very rarely caused by anxiety.