Good luck to Rosemary

[Hilary Johnson]

You guessed it - yep, you rabbit on incessantly.....

As Andrew said, there seems no end to it. I was starting to think it was sorted - but to react like that just to eye drops.... I dunno, not a doctor. And not really surprised at the mix-up in the lab. They have a big machine that does those tests automatically.. but you probably know all about that.

H

[Andrew MacLean]

Rosemary

Even if the solution is not being found, at least answers to your questions are beginning to arrive. Let us hope, at least, that as the answers accumulate there may be a pattern that is discerned that will switch on the light in a diagnostician's brain and render the solution. (I watch 'House'; Hugh Lawrie never gets the answer until the last five minutes of the programme. Maybe your case is now at about the second commercial break).

Andrew

ps sorry about the pop culture metaphor.

[rosemary johnson]

H: PHLS (as was) did Microbiology; I know very little about the other disciplines in practice. Though mmy colleagues did always say they were the least automated.
Andrew: think the diagnostician will be me; who else?
Next step will be to talk to my new consultant/team about the eye drops.
And work out a more systematic schedule for wearing the new lens little and often and building up very slowly. The eye does not feel bad when I take the lens out, but it does the next day. This is odd in my previous experience, but maybe it is the effect of the trauma of the op.
Rosemary

[Barbara Davis]

It's not uncommon for people to be their own diagnosticians, especially with one of the countless rare complications few doctors have come across! Individuals are able to watch their own symptoms far better than anyone else, have (in theory) the whole of the internet at their fingertips and can have far more time to spend on their case than any profressional.

I think you've also hit on something when talking about automated machines and knowing little about other disciplines. When I looked into opiod testing for you, it was clear that almost everything available related to street drugs. My guess is that is automated and anything else may require one-off specialist testing, possibly very time-consuming, very expensive and very unfamiliar to most of the lab workers. Did the person requesting your tests know whether that was the case, and make the requirement sufficiently clear to overcome what was probably an automatic "interpretation and categorising" operation on the part of somebody working in a completely different speciality, who had to turn the original request into something meaningful for the laboratory?

My suggestion for when the tests are re-done is for the sample to be accompanied by a clear description of precisely what is needed and why, even if it is written by you (remembering the samples probably have to be sorted at high speed by the newest staff member, who has not yet had their morning coffee - so don't exceed 20 syllables in total!). It must be very depressing for you that the wrong thing was tested, and I am seeking to understand (rather than excuse) so that the same mistake is not made again. But I can understand how people doing their best can make such mistakes: it's simply a breakdown in communication between different experts in an increasingly specialised world.

Keep your chin up: at least you can ride (and jump) Duke and that must be a big plus knowing your love of horses.

Love from Barbara

[rosemary johnson]

And the person doing the self-diagnosis is the best one to know how their own head works, and how their own body works when it is well, and whether descriptions of possible symptoms fit or not.
No-onw else can possibly know ore about how my head works than me - they don't live in it.
As regards the test: I don't know whether the problem is the way my GP filled inthe form, the first lab, the second lab, the holes in the middle of the referal process or the person who designed the form ith such small boxes to write in!
THe key info this time is tht it has gone off with the name of the person Ruth (at GP's) talked to about all this, and who thus knows what it is all about and what needs to be done.
THe underlying problem, even when that gets to the right place (the fifth hospital in this saga!) they may test fine for the normal metabolites of the substance - but what I asked was whether I'm breaking it down in an abnormal manner (Ruth has written this in both boxes on the form).
It's a bit like asking what one wouldn't expect to find under a Scotsman's kilt - two porcupines, half an avocado, the wreck of the Titanic, peace in the Middle East, and - by definition - the lower half of a Dagenham Girl Piper.
If Andrew will pardon me for using that comparison.
Is there a test for all those and more????
The toxicologist at Hospital 2, who told anaesthetist at Hospital 1 what to tell my GP to put onthe form, seemed to think what they were saying would work.
Hospital 3 and 4, by the sound of it followed procedures.
There may or may not be an MLSO or two in Hosps 3 or 4 tearing their hair out because they know what they should have done if they'd been asked the question right. According to some of ours, they used to do that.
Who knows?
We will see what comes back this time - though I'll be surprised if there's anyting left to find by now.
Meanwhile, it seems my emails did get through to the eye hosp, so I haven't been blacklisted - for unParliamentary vocabulary or any othe rreason.
Rosemary

[Hilary Johnson]

Hi
I'm still following this.
I guess if it was all caused by steroids in the first place, the opiod idea is a red herring and the tests wouldn't've found anything anyway...??

But where do you go from here? So far it's been mostly about trying to find what is to blame. If it IS caused by steroids, apart from avoiding them as much as possible, (which seems to be difficult if just a few eye drops trigger a reaction)is there anything else you can do to recover from it? The internet sites I've seen on the subject talk about talking antipsychotic drugs to counter it - I guess you don't fancy going down that road... Is there anything else that is known to help? Or anything that helps make it not-so-bad for you?
Hilary

[Andrew MacLean]

I guess like most people here I am absolutely at a loss to know where I'd go next if it were me.

As I have followed the saga it comes to this: steroids are good but what if you can't take steroids?

(That, and what does Rosemary tip for the 6.30 at Chepstow?)

Rosemary, you know that we are all with you in this, but I guess we all feel completely helpless. You inspire us by your battling spirit. Not defeated and not cowed, you keep going where others would have abandoned all hope.

All the best.

Andrew

[rosemary johnson]

Hallo Hilary and Andrew:
Where to go from here? Well.....!
Let's start with the easy bit: tip for 6/30 at Chepstow is to get a new bookie! The next meeting at Chepstow isn't until Friday. When there are 21 horses entered for the 6.30 but the final list of runners isn't yet available as the horses won't be declared as actual runners until tomorrow lunchtime. NOr are the details of booked riders yet available, which will be important as the 6.30 is a race for apprentice jockeys, and it often pays in races for inexperienced riders to back the best rider in the race rather than necessarily the best horse.
There - didn't expect a serious answer to that, did you?!!
Back to steroids....
Yes, it is possible that the opioids are completely blameless. It is also possible they wore off as quickly as theory would suggest and would have been undetectable within a few days. It is, of course, possible they did wear off quickly as per the book but were a contributory factor, at the least, in the early stages.
If they were blameless, that is reassuring in a sense, in that if I'm rushed into hospital concussed after an accident and filled up with them before anyone finds out they shouldn't be doing it, the same is not likely to happen again. But being not totallys ure they're blameless, I shall advise against using them anyway.
Antipsychotics: yeah, I think they might be considered whatever the cause of the initial effects, or indeed whether any cause was known or not. Someone in the US I know via an email group mentioned them as given to people who have post-anaesthetic psychosis. By the time I'd got as far as explaining to the group what had been happening and he'd said this, it was too late for the initial 3 weeks of "acute" effects - fortunately, as it happens, as I was so desperate (and out on my feet from tiredness) I might have taken them. Which I think might have been disastrous...
Why? - well, believe it or not, and in contrast to some of the reports I've read of other people's experiences on steroids (also people who've gone mad on Lariam, for that matter) is that at no stage, even when first waking up in the hospital and unable to tell what I was just seeing in my mind's eye and what I was saying about it..... even then...
.... at no stage have I not known that I was hallucinating (or having other odd effects from whatever-it-was), and what I was seeing wasn't real, or rational, etc etc. Even lying onthe ward floor still mostly asleep from the anaesthetic, I did know that the overwhelming urges to strange That Surgeon were.... hallucinations for want of a better word.... and that i didn't really think it was a good idea and I didn't want to dfind myself in Holloway and/or Broadmoor.
ANd the best way to cope withthem has been to keep as clear a head as possible, know them for what they are and "think through" them.
From what I have gathered, the trouble with antipsychotics is that - like your experience with painkillers, H - they tend to shut off the higher, intellect, bits of brain function, and leave the taker feeling half-brain dead and dopey all the time. WHich is why people diagnosed with schizophrenia don't like taking them and often give up, with or without doctor's approval - ecause they can't think straight, don't feel themselves, can't get on with work/ordinary life, etc. I'd be very worried that they - or for that matter, sedatives, tranquillisers, or anything of the sort - would turn off or at least hamper the higher brain functions that I was using to know what was going on and think through them.
If you see what I mean.
Which means the thing I'd be most worried about for the future is any misguided person ignoring strict instructions (which they WILL have!!!) about "DO NOT sedate or tranquillise under ANY circumstances" - which I almost wrote onthe consent form, but fortunately I think no-one tried....
How best to ensure that no-one does that is somethingn (else!) I'd love to get a comment on from my nice anaesthetist...
As regards steroid input : I'm working on the basis of cutting down/out as far as possible - have changed asthma inhalers and the new ne seems better (for the asthma as well as the bad trips), and will be discussing the eyedrops next week at next hospital appointment. And keeping of fthem in future. I've already asked anaesthetist and will ask others how much of a problem it will be not to use them if I'm in an accident, and will ask others.
Trouble is, of course, that steroids can also be endogenous - ie. you make them yourself. Now, I've never been one for those adrenaline-rush activities like bungee jumping....
Is histamine itself a steroid?????? - if so, am I caught between devil and deep blue sea??
I'm hoping that, with a rest from the things, and time to recover, the hypersensitivity will wear off, or at least calm down. After that old neck injury untrapped itself, I had a very odd reaction to adrenaline for ages - endogenous variety, I mean; least little thing, pin dropped, whatever, and I'd jump out of my skin. That wore off eventually.
But we'll have to see......
Rosemary

[Barbara Davis]

Quick answer: no, histamines are not steroids. In chemical terms they are simple derivatives of an amino acid, with just one ring, whereas steroids (by definition) have four rings.

[rosemary johnson]

Thanks Barbara - that's reassuring, at least.
Rosemary