Conversion Disorder???

[Guest Finrussak]

With so many of us facing at one time or another the possibility of a psych dx I felt we needed to clarify:

You absolutely CANNOT have "conversion disorder due to POTS" or DUE to anything medical. The definition of conversion disorder according to many texts of psych diagnostic guidelines is :Sudden onset of symptoms, due to stress or trauma, that CANNOT BE EXPLAINED BY ANY OF :KNOWN MEDICAL CONDITION, ILLNESS, PATHOLOGY (I.E. TUMOR), OR SUBSTANCES (DRUGS). It is very often misdiagnosed as the guidelines warn that 1-2 short exams cannot diagnose this and every medical condition related to the symptoms must be ruled out. Well, abnormal blood tests dispute this. And anyone who hasnt ever been worked up for dysautonomias, also disputes the dx. Its also known as "hysteria" such as "hysterical blindness, hysterical pregnancy etc"...and part of a class of psych conditons known as the 4 "somatoform disorders" These are : conversion disorder, hypochondria, somatization pain disorder and Somatization. The last ( also often pinned on us) must include long complicated medical history, psychological distress and/or interpersonal probs, CIRCUMSTANTIAL medical results, vague INCONSISTENT sx, and NO NON-PSYCH CONDITION THAT EXPLAINS THE SX!!!! again the warning that all psych drs rule out all medical conditions/illnesses. This definition alone shows how many of us are misdx!

also discussed in the textbook is that conversion is often confused with other psych disorders like General Anxiety Disorder and somatization. So while we can have GAD or anxiety/panic along with POTs etc, and dysauto can precipitate anxiety sx, actual "conversion" or "somatization" can only be dx as a separate disorder and not caused by the dysauto!! Which makes it all mucky in that the sx are almost identical. Besides, once there IS an actual dx of a medical condition ( i.e. dysauto) then by definition, the sx associated with that med condition cant also be attributed to conversion OR somatization.

Obviously "we" fit into many of the associated lists of sx-which explains the snap dx we get -BUT since we all have faced and continue to face the biases of many Drs we all need this info to be armed. This way WE can understand what truly is physiological and when/if we need psych support!!!

This also doesnt discount many of us needing psych support to cope with the illness itself, affects on lives, etc. Needing supportive therapy and/or psych meds still means we have the right to not be mislabeled.

So, what to do when an ER dr or another tries to dx us with either "conversion" or "somatization"??? Simply ask if all medical causes for the sx have been ruled out and if the diagnostics are all normal (blood tests etc)...hopefully it will then become obvious!!!

[Guest Finrussak]

there seems to be some confusion...and misinterpretation of my comments to mean that if you have any condition like dysautonomia then you cant also have "conversion disorder". I never implied this. You can have any med condition with one or more psych disorders at the same time -its just that the sx directly attributed to dysauto cannot be the basis for the conversion dx BY DEFINITION! Often the stress of coping with something like POTs etc can precipitate anxiety, panic, even other unexplainable sx that MAY be one of the somatoform dx. But this is in addition to the sx caused by the original illness. I agree that its very hard to separate the sx as they overlap; hence the difficulty of many professionals and the temptation to dismiss the sx as "psych".

My goal was to repeat the definitions/ dx guidelines that Drs are expected to use in order that we can understand better, ask in depth questions, and be able to make informed judgements about our treatment. Sorry for the confusion this may have caused.

[melly4]

My problem is that many of us who have either been misdiagnosed with anxiety or other mental illness or have anxiety along with our dysautonomia cannot "shake the label" of mental illness. When many (not all) healthcare personnel see a mental illness diagnosis in your chart, you are automatically treated differently in many cases. Symptoms or injuries not related to the "mental illness" dx somehow get attributed to the "mental illness". For instance, my very sick gallbladder was misdiagnosed as "GI problems associated with panic disorder". When my head was bashed into the side of a U-Haul truck this summer, the paramedic noted that I was taking depakote (for migraine prophylaxis) and Klonopin ( for vertigo spells and anxiety attributed to heart palps).He assumed that I must be bi-polar and had panic. He assumed I was having some sort of breakdown ( actually, I was having a C-spine injury, as later diagnosed via X-ray). The only reason he needed to know what meds I was taking was so that I didn't get anything mixed in my system with the meds I take that could cause a dangerous reaction. He had no right to try and diagnose me: He wasn't a doctor!! I also have a friend who does have panic disorder who had a massive MI after his chest pains were dismissed by the ER docs as panic-related. And my oldest son (now diagnosed with POTS) had his syncope and tachy originally misdiagnosed by a peds cardiologist as school-related anxiety. He somehow missed the fact that my son was homeschooled!! I apologize for my rambling and venting, but this subject of our symptoms being misdiagnosed as mental illness or our mental illness being the cause of ALL of our ailments really gets me going!!

Peace,love, and better healthcare,

Melly

[Guest Finrussak]

I have experienced the exact same thing over and over which is why I found myself compelled to explain where the drs may be getting their facts wrong...IF we sound like we know whats up, theres hopefully less of a chance to be dismissed as mental. Youd be surprised (or maybe not) how many Drs and paramedics dont have the full info (like full basis for dx criteria) and rush into a snap judgement based on the 1 or 2 pieces they heard in class to assign the dx.

Not to "preach" but we have to be on same page, know our definitions, criteria for dx, and understanding what really is going on inside of us so we can help them to help us.

And thanks Melly, for "getting" it...and I personally know how hard to shake a label ( I am a recovering agoraphobic, panic attack person -- former symptom free now 15 years!!! and latter disappears after Lyme tx!!!-whose present sx no matter how bad are always blamed on the past history!!!)..and it often (not always) helps when I calmly explain to medical personnel what I know. Yes I get the " how do you know without a medical degree" speech and the "yeah right the rantings of a lunatic crying Im not crazy" comments...but most of the time they stop dead in their tracks and think about what Ive said.

[morgan617]

Okay, in my massive post, I did neglect that I agree, once you are labeled, whether it's unfounded or not, it sticks like glue. One of the first things I said to hubs was, now every symptom I ever have again will automatically be psychogenic, and trust me, as a nurse i saw how people were treated. And it wasn't good. The things doctors and nurses will stand around and say about people is appalling. When the paramedics took me in the last time, one turned around to the other and said, psych case, as if I wasn't lying there hearing it. The nurses were instructed to stand outside my door and discuss that nothing was wrong with me within hearing. I had a urine tox screen to see if I have munchausen's. That is a permanent record. So, what I neglected to say in that massive wind bagged post was, yea it fries me too, I will accept the truth, but not a label....donenowiswearmorgan

[michiganjan]

I do believe that there is such a thing as conversion and Munchaussen's and hypochrondria, however, I think these things are very rare and that they are often used as a catch-all by doctors who don't know what is really going on with a patient.

I think there is very little hypochrondria in this world and a lot of physical illnesses that we don't know diddly about yet.

[morgan617]

Well said Jan!!!!

[Guest GayleP]

I think it's also important for doctors to realize that if we're depressed or anxious it's secondary to our illness. What came first the chicken or the egg. In most of our cases we might not have depression or anxiety if we were not physically ill.

I think it's normal to at times be depressed and anxious when you have a chronic illness.

My HMO offers mental health services. I saw a therapist there for a while to deal with anxiety re: being sick. Unfortunately the medical docs in the HMO have access to the mental health records so I always felt like I had a big A for anxiety stamped on my forehead. My docs would always bring it up. I felt like it was none of their business and they shouldn't have had access to my mental health records without my consent.

I solved the problem by finding a new therapist outside my HMO.

[Dizzy Dame]

Hi Gayle,

I feel you there. I do have anxiety, but it is caused by my illness. I mean, I think it's not out of the ordinary to worry I'm going to fall and hurt myself, or to ask the waiters at restaraunts if the kitchen staff wear latex gloves (I have a severe allergy).

I get so sick of people telling me "maybe your heart's racing because you're anxious". How many doctors do I need to see before my friends and family believe that POTS is not caused by anxiety?!? I've been thinking about getting an note from my POTS doc stating that "POTS is NOT caused by anxiety." Maybe then people will stop telling me it's all in my head.

Do any of you have this problem? How did you resolve it? Did it get better?

I've also been seeing a therapist who'se been helping me to deal with my illness. I've found her to be indespensable.

Well, there's my two cents.

Cheers,

lauren

[Miriam Poorman-Knox]

Ive found that wearing the bracelet helps!!!!!! People want to read it and medical professional check it,,,I tell them its my medic alert bracelet(for now) Miriam

[Ernie]

HI,

Now that I have my NIH file I am believed but the "best" doctors' comment I got 6 months ago when I went to the hospital for 8-day stay when I showed them my TTTs and all the American testing I did was: "Who's patient file did you take?"

I couldn't belive that they were acusing me of stealing someone else's medical file when my name is written on the pages. It seems that whenever a doctor does not believe in you they come up with all kinds of excuses. If I wanted to steal someone else medical file I would choose someone who is "curable" not a hot potato file!