Hi MF
I am a former investigations officer for the Fed Govt. I have been taught how to find things. I have argued with abt 15+ ppl with high degrees about this subject. The internet is my greatest resource tool plus DSM IV (The Diagnostic and Statistical Manual of Mental Disorders - the clinicians guide by James Morrison), Moseby's Medical dictionary, a large dictionary and The Australian Drug Guide.
I had an argument with my psychiatriast when he wrote out a referral letter saying I had "occasional somatic preoccupation". I hit the roof and asked for the copies to be deleted from my GPs PC and the hard copy returned to me. I then wrote psych (Malcolm) a letter saying that this diagnosis gave me no chance to explore any conditions or side effects which came with CAH. I would be dismissed as a "hyporchondriac". Psych was angry with me for withdrawing his referral and I had to sit and listen (without hearing) to him angrily denouncing me. (I am used to angry drs, my father was a GP.) Now that my psych is aware of the research I have done on side-effects the shoe is on the other foot!
I am thankful and extremely grateful to the Mother of Douglas Ray Jester Jnr who took the time to set up a Memorial site to her son who died aged 21 of SWCAH, see http://www.geocities.com/Heartland/Canyon/7906 then click on the picture to find out about him. It was here I was alerted to "inner trembling". I understood exactly what had happened. I have always kept quiet abt this symptom thinking psych would give me this diagnosis again. In fact I should have been SHOUTING abt this symptom which indicates a steroid imbalance!!
My absolutely useless endo laughed when I asked him a direct question one day - Do you have a cold? He said Yes, and when I asked was it contagious, he laughed again and said Probably. Now look at Douglas' story and tell me if his dear Mother found it funny that he died of "a virus and pneumonia"? This is what I said to my psych and I just abt threw the paperwork on dear Douglas at Malcolm. It shut him right up and made him look stupid too.
Do not be afraid to challenge any of yr medical ppl as IMHO you will know better, prooving it is another thing.
What you have said in yr post is exactly correct too. I know just how you feel and you have every right to be angry abt this. I honestly would hunt around for a good psych so you have someone to talk to. Malc said I would have to see a psychiatrist for life and I have seen him for 10+ years already. How could any right thinking parent agree to have their daughter's genitals interferred with without the consent of the child??? Even WHO and most countries have denounced this as illegal (sometimes called female circumscion but it is nothing like this and CAH seems to be an exception - WRONG!). I will send you my email address. Sorry I am a bit, well a lot really, belligerent abt this.
Love
Farli
