[Megan]

It's been awhile since I've posted here.

In the intervening time I have been fast coming to the conclusion that my diagnosis is what I feared most; not because it is a death sentence but because of medical scepticism about it's very existance. Of course the condition is ME/CFIDS/CFS/FM (which basically is an umbrella term for a cluster of documented specific symptoms with a possible number of causes, for which at this stage, there is still no laboratory proof).

One very interesting thing (among many) about ME/CFIDS is that in the supporting literature it is often called among other things, a neurological condition, ....yet...

......not once in my search of algorithms and medical papers outlining various neurological disorders and causes of peripheral neuropathy did I find any whiff of a reference to ME/CFIDS. Yet burning, tingling and abnormal peripheral sensation can be a symptom, as can fasciculations (muscle twitches). Nor too did either of the neurologists I had consultations with, after hearing my long list of symptoms, ever allude to the fact or suggest that what I may have could be ME/CFIDS as the cause.

It's quite unbelievable to me that these supposedly learned people do not even consider or have the intellectual integrity to look at the whole picture and include this scenario as a possibility. They must see numbers of people who fit this profile and are sent away empty.

I have recently sought out a doctor who has some experience with ME/CFIDS and he believes that the 23 symptoms that I have been experiencing for the past 10-12 months do fit within the documented guidelines of this elusive condition. He is now eliminating (among other things) possible causative agent antibodies which may have stimulated a heightened/lowered immune response - like Ross River Fever, Q Fever, Murray Valley Fever, mycoplasma, psitticosis, legionella etc etc.

Regardless of testing outcomes it is heartening to know that my symptoms are being validated by someone who is listening and seems to understand - at last!