1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
Discuss the article on the Forums.

Feedback wanted on letter to Consultant

Discussion in 'ME/CFS Doctors' started by jaywalker, Sep 6, 2013.

  1. jaywalker

    jaywalker

    Messages:
    12
    Likes:
    1
    UK
    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:

    1. 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”)

    1. 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.
    2. 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.
    3. 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?
    4. 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.
    5. 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.
  2. jaywalker

    jaywalker

    Messages:
    12
    Likes:
    1
    UK
    PS yeah, I know i put #1 twice over but the text editor isn't working for me, so cannot correct :(
  3. helen1

    helen1 Senior Member

    Messages:
    304
    Likes:
    210
    B.C., Canada
    Hi Jaywalker,
    Good idea to write. Have you tried this before and did they respond in writing?

    I have a few bits of advice about your letter:

    The shorter the letter, the more likely a written response. The less issues you raise, the more likely a response. So I would shorten it considerably, focusing on your 5 points, leaving out much of the rest.

    Paragraph 1 would most likely bias a doctor against you right from the start, so I would leave that out, in particular:

    "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 would also not beg to tape the interview, I would respectfully inform that I will be taping the interview due to my poor hearing and memory, in as few words as that.

    I would completely leave out the discussion on the cause of ASD, as this does not pertain to the cyst issue, which I'm assuming is the immediate priority you want addressed.

    Wishing you well. Let us know how it goes.
    leela, rosie26, Crux and 2 others like this.
  4. Kina

    Kina Moderation Team Lead

    Messages:
    4,866
    Likes:
    3,163
    Ontario, Canada
    I agree with helen1 -- the more succinct the better. I would stick to asking direct and relevant medical questions as they pertain to your appointment and leave out the rest.
    helen1 and peggy-sue like this.
  5. jaywalker

    jaywalker

    Messages:
    12
    Likes:
    1
    UK
    I always write to my GP nowadays, and she reponds verbally. Communication between us has improved markedly, since I adopted this approach. She suggested that I write to the neurologist in advance of my appointment, which I did. I had mixed results here. The neurolgist insisted that I repeat all the info verbally, which I made a very bad job of,and his subsequent report made it clear that he had never read my written info, beyond picking out phrases out-of context. ie, it presented a completely garbled picture. However he subsequently left that clinic andthe lady who replaced him seems to have done much better .

    Prior to this (2 years ago) I saw a neurologist who would not even allow me to refer to my (very brief) notes);and I therefore failed to mention some important symptoms. She also dismissed those symptoms that i did mention as all in my mind. This resulted in my being assessed as "fit for work" and my benefits being stopped. Which was all highly depressing to say the least, and I nearly wound up on the street.

    I also had a very similar experience with a gastroenterologist

    In the light of these past experiences, I feel it is absolutely crucial that the consultant should understand why I depend so much upon the written word in an interview situation. I feel just about ready to sue the bastards if they continue to make things so difficult for me *laugh* . If they contine to ignore what I've written, and choose give me the third degree verbally instead, then things will go very badly.

    Now , I don't feel I have any grounds for complaint about all this- nor any reason to expect things to be different -if I fail to explain myself. Thus , whilst I take your point, I do feel that the explanation is cucial

    Perhaps this further explanation will also convince you of that?

    I do have a disability, and it reasonable to expect that to be taken into account. It is not reasonable to whisk the crutch from under my arm, so to speak, but that is what has happened thus far.

    Now I think I put that part very mildly and politely, given past experience, however I am definitely open to suggestions for improvement.

    My main concern now is that my words don't excatly convey the imprtance of that point, do they? Or else you would not have considerered that part superfluous,

    So the question is how to make that point succintly, politely and also unmistakably

    Thanks for the feedback. i might pick up on some other points later.

    j :)
  6. jaywalker

    jaywalker

    Messages:
    12
    Likes:
    1
    UK
    OK, gonna quote myself, explain why I included the following parts, and ask for better suggestions for achieveing same objective. I do agree that the 2nd para is cumbersome.

    Again I'm attempting to preclude repetition of former problems. Not seeking to get answers in advance, but to ensure the consultation goes smoothly.

    It's been my experience, inthe past, that my fear of miscommunication is far too evident on my face, and in the tone of my voice, and has been misinterpretedas a fear of hearing the truth. This led to a "vicious circle" type problem that took years to untangle. ie, the more afraid I was of being lied to yet again, the more it occured, with every kindly intention on the other person's part. This episode did nothing to soothe my fear, as you might imagine.

    Obviously, if this should happen in a medical context, there won't be time to iron it out retrospectively.

    Also I think my fear of needles and invasive procedures would likely be all-too-evident in a medical interview, and might be equally open to misinterpretation,

    I put the second paragraph because I'm aware my sister wrote to the hospital to say that I was suicidally depressed.
    and I think they might be over-cautious as a result, which might compound that problem.

    Of course, my depression had nothing to do with any prognosis, but, conversely. more to do with lacking a prognosis, nor any identifiable illness; and particularly my negative experiences with consultants, which had led me to feel that my situation re ever attaining a diagnosis was hopeless. As i expect you know, it's not easy to battle an entirely "imaginary" illness alone. When my sister wrote that letter, the garbled neurologists report had come as a final kick in the teeth. I did not expect the MRI he'd ordered to reveal an abnormality, as a previous MRI had revealed nothing.

    Thus a clear diagnosis was exactly the tonic I needed. By this time, I didn't care if my condition was fatal, so long as it was officially real. And that is how i continue to feel.

    However, I do get the impression that the neurolgist might have "played things down", and I am keen to get at the unvarnished truth. Indeed , if I 'm to be offereed a range of treatment options (which appears to be the case, from what she said) I think the unvarnished truth is an absolute prerequisite to making a decision.

    OK. Now how the heck do i cobver all this without getting too wordy or anything? These are totally realistic fears. I just don't want things working out like they usually do (in my life).

    j :)

    PS I've worked out the edit problem! You have to click "further options" to be able to see an editable copy of your post. Not exactly intuitive! lol
  7. jaywalker

    jaywalker

    Messages:
    12
    Likes:
    1
    UK
    Sorry for being so long-winded, but as you can see, I'm trying to address a rather complex set of underlying issues in that letter, and i'm really nervous of ballsing this up.

    As I hoped would be clear from the letter itself., the intention is to get this, not to supplement, so much as to sustitute for verbal communication on the day.

    The fact is, when I'm actually speaking with the guy, i'm going to miscommunicate pretty drasticaly, can't help it. I can talk very cogently, and at length, but find myself unable to say what is actually on my mind; largely because- in that situation- I don't actually know what's on my mind; it runs away , like water through a sieve, whenever i try to articulate it. I'll be lucky if I'm able to clearly recall my name and address :lol:. Now, I've talked this issue through with others "on the spectrum" and we all seem to have the exact same problem; so I'm very sure it's a consequence Asperger's/ASD; which is why it made sense to me to mention that twice.

    OK , twice might be excessive, but it definitely needs mentioning, and the relevance of it to a consultation situation, needs making very clear

    Incidentally, I think that's probably why we Aspies tend to run off at the mouth so much. It's a way of hunting down that infinitely elusive thing we meant to say. Again, there's no time to do that in an interview situatuion; but I am actually incapable of coming direclty to the point, verbally (can do so in writing- after much editing :D) Cut in on me, hurry me up, and my mind goes perfectly blank.

    j :)
  8. helen1

    helen1 Senior Member

    Messages:
    304
    Likes:
    210
    B.C., Canada
    Perhaps I wasn't entirely clear. I think you'd do well to keep this part:

    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.

    Then leave out the bottom section about the cause of ASD.
  9. jaywalker

    jaywalker

    Messages:
    12
    Likes:
    1
    UK
    Hmm. My first thought was that you saying that I could run into prejudice against Autistic people. Which might be true but on further reflection your choice of quote suggests otherwise.

    Of course, it's so eminently sensible to preface an important act of commication with an admission to having a communication disorder (and ask for allowances to be made on that account) that basically, if that 's not acceptable then it's bloody hopeless (and also not my fault)

    Of course it's not directly to the letter, but more to the subsequent interview. But it's a case of , if it needs saying, then it needs saying now, because i'll simply not be able to explain that on the day (Have tried before, and my mind just went blank)

    Anyways, hopefiully you've had the patience to read my other posts (if so, well done! And thank you! )and will see why i think it necessary to explicitly state what works and what doesn't, in my case? I've been royaly screwed by people forcing me to commicate verbally instead (and without the benefit of notes)

    Next question then: is there any way to guard against an all-too-likely recurrence , without arousIng impatience and prejudice?

    j:)

    EDIT: oops, cross post lol (just seen your reply above)
  10. Sea

    Sea Senior Member

    Messages:
    630
    Likes:
    635
    NSW Australia
    Is there someone you can trust who you can take with you to the consult? It is often easier to intercept miscommunication if we have someone who knows us there as well.

    Doctors are not experts in communication and, while I agree what you are asking for is reasonable, it may well be beyond the capacity of the doctor to utilise your preferred method. Most doctors would be very nervous about being recorded and you may get less straightforward answers in that case.

    By the way, it was very rude of the doctor who refused to allow you to look at your notes. That is not acceptable, but sadly doctors doing work fitness assessments are known for being bullies.
  11. jaywalker

    jaywalker

    Messages:
    12
    Likes:
    1
    UK
    My sister has been able to attend some consultations with me, but she lives 130 miles away, works full-time and has a large family who depend on her. She has been of some help, but that's not a complete solution. For one thing, Doctors have a habit of asking surprising questions (things one hasn't discussed, beforehand, not with anyone)

    A friend of mine will be attending the next one with me. For various reasons (including that he has much the same problems as myself) I don't think that will work out so well. There is nobody else who lives locally. I've been ill and impoverished for so long, I've had no social life, and thus drifted out of touch with friends.


    Yeah, i was thinking that *sigh*, but I just can't come up with a better plan . It's my sister's suggestion, btw, and not somethinhng I thought to try before. At the last consultation,I think i did a better job of answering questions than usual, but at the expense that I could recall very little of what I'd been told. My sister had to fill in the blanks for me.

    Obviously it's crucially important to hear what the consultant says, but I 'm just not able to talk about myself (absolutely required!) and also listen , simultaneously. (alright , not exactly simultaneously, but the rapid back-and-forth of normal conversation is plenty near enough for me). One or the other inevitably goes to pot (if not both)

    I suppose that attempting to surreptitiously record it would be a really bad idea?


    that's what i think :) I'm fuming about her whole atttude, and so are my family.

    However, it wasn;t a "fitness for work" thing, just a normal NHS consultation. The fitness assessment came later, and was clearly a foregone conclusion .They delayed it due to waiting on a "medical report" . There was only one report in the pipeline. And when I, later, read the fitness Doctor's notes, these contradicted things i'd told him in many different respects, without even mentioning my point of view; and instead reported what was clearly the consultant's opinion - nothing physically wrong- as fact. This was particularly problematic as my Doctor had run out of ideas by then, and had done all the tests she could, and sent me to all the specialists she could; so I could no longer even say that things were "under investigation"

    jay :)
    Sea likes this.
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,185
    Likes:
    1,532
    Midwest, USA
    Would your GP be willing to contact the neurologist and tell his that she had found that it worked better to communicate with you in writing?

    Could your friend focus on writing down what the neurologist says while you focus on providing any information not in the notes?

    Perhaps you could have a couple of ‘stock replies’ ready if the neurologist is uncooperative.
    If he tries to question you instead of reading the notes say, “I do not communicate well verbally, please read the notes I have provided”.
    If he tries to keep you from consulting your notes, that would be the time for, “Finding the appropriate note is a lot more effective than searching through my wayward brain for an apposite answer.”

    Unfortunately, anything you say that implies that you expect the neurologist to act in the problematic ways that other medical care practitioners have acted will likely antagonize him. I do not have any suggestions on how to circumvent this.
    Sea likes this.
  13. jaywalker

    jaywalker

    Messages:
    12
    Likes:
    1
    UK
    Some good ideas there :)

    Slight problem with "stock replies" , but nvm

    Sadly, I totally get what you're saying.

    But then I think : if the same thing happens repeatedly and I never speak up about it, then isn't it my own stupid fault?

    I mean, "Take it lying down and hope for better luck next time" seems like the only alternative to risking ruffling his feathers a bit. And that's not usually a very good plan, is it? (That's exactly what people do if they'd sooner keep their grudge than fix things.)

    j :)

See more popular forum discussions.

Share This Page