Hi As I stated in my introduction thread, I've had an "urgent" referral to see a neurosurgeon in the UK (NHS. Thus "urgent" means in about 4 weeks's time), presumably regarding a cyst on my pituitary gland. My neurologist has said she thought this cyst is responsible for all my CFS symptoms. Well, simpler to quote myself, rather than say something twice So here it is. Any thoughts/suggestions for improvement? I know I'm repeating myself on some points. But these are points that tend to get overlooked, and Doctors are as human as the rest of us, ya know? Thanks in advance. j DRAFT LETTER: I am writing due to my Asperger's Syndrome, which results in numerous subtle communication difficulties. These can largely be overcome by writing rather than talking. Please be aware that I have no Plan B, should this also fail due to inattention on your part. I do need you to read and respond to my remarks, as written, just as if these were spoken to your face If you insist on me doing this verbally instead (a very frequent occurrence with medical professionals) I shall “miss the point” (or rather several points) and leave the interview without the answers I seek. Also, I must beg your permission to record the interview. If I succeed at all in putting my side across it will be at the expense of hearing what you have to say, as I cannot switch my attention back and forth efficiently. It would therefore be wise to have a recording. (I shall need to have any unfamiliar words spelled out, however as my hearing is “fuzzy”) There are three three things that terrify me: needles, invasive procedures, miscommunication. Note this list does not include illness or death. The best way to reassure me is to be as informative as possible, and avoid talking down at me/ use of euphemisms. If I find the language over-technical, I can and shall simply go away and look the words up. I assume this interview concerns the “cyst” on my pituitary gland,which the neurologist said is likely reponsible for my extreme fatigue, muscle spasms and other symptoms I am surprised to find this was considered urgent. In this light , here are some questions and observations: I find that the words “cyst” and “tumour” are frequently used interchangeably. Is there an actual medical reason for classifying this as a cyst and not a tumour, or may I assume the terms to be interchangeable in this instance also? (In the former case, some other questions may be redundant as most of the available info concerned “tumours”) I understand that the vast majority of pituitary cysts/tumours are asymptomatic as well as non-malignant In this light, how certain can we be that that this is the cause of my symptoms? (bearing in mind that other issues are under investigation). I would not wish to undergo corrective procedures without ruling out other causes with a reasonable degree of certainty. I have numerous symptoms of variable intensity. I would like to know which of these symptoms could be caused by the cyst . I shall bring a check list with me. I would also like to know if any other symptoms besides the trigeminal neuralgia might be caused by venous loop at this nerve? I also i have other question re this, if appropriate, and if there is time. I had an MRI at Rugby hospital 2 years ago, which found no abnormality whatsoever, though my symptoms were already quite severe.. What are the implications of this? I believe there are substantial reasons for considering a congenital mitochondrial disorder in my case (reasons documented separately) I realise that this does not preclude the suggested pathogenesis, but rather makes it all the more likely that tumours will develop. (due to impaired apoptosis) It also increases the likelihood of alternative/additional pathogenesis. This impacts on #2. I am also aware that MD cannot be ruled out on the basis of a blood test, but are extremely tricky to diagnose. Please don't offer me any such glib “reassurances” re MD nor anything else. Though I tend to react to good intentions with appropriate gratitude, I do find that such information has the polar opposite effect to reassuring me, underneath, as I tend to take them to mean “We're not interested in pursuing that any further” For personal reasons (ie concern for my son) I am far more interested in any congenital factors than I am in the actual state of my health. Frankly, I have been through hell, due to having my symptoms dismissed as fantasies, as I was therefore denied essential Benefits and other help, as my health relentlessly deteriorated; but rather faced impossible conformity pressure. I would go through hell again to avoid him facing the same problems in 20-30 years time. I hope you can understand and respect my point-of-view that etiology is therefore far more important than cure, in my case. This is not merely academic interest. Concern for my son underlies my every question; however, I never think to vocalise this. I note that medical professionals are concerned to offer patients reasons for optimism. In my case, I only feel optimistic when I feel that progress is being made towards understanding the etiology at a fundamental level. The prospect of a sucessful treatment in the absence of such understanding would actually be extremely depressing, at this stage, as it would leave those important questions unresolved. I have said that I wish to be more (psychology) comfortable. I put that very inadequately as this is what I actually meant, and I cannot suppose that my words would have been understood in that light. I have recently been told that my ASD was likely caused by a difficult birth. I did not say, but, given that my son and father also have/had very similar issues, along with other relatives on both sides, this is surely far more likely to be genetic in origin? (This is typical of my problems in interviews. I repeatedly find that I am unable to formulate/vocalise the more important points in this situation, but rather need time alone before I can put my thoughts in order) That said, I have received conflicting answers as to whether my brain was damaged at birth. Clarification would be very welcome, as my elderly mother is concerned about this, to the point of obsession. I shall bring further notes to the interview with me, in case they should prove relevant. Please be aware that time spent finding the appropriate note is generally a lot more effective than time spent searching through my wayward brain for an apposite answer. It is not the case that important information resides at the “top of my head” and is easily retrievable; but rather the reverse would seem true in my case.