davidgillon | Entries tagged with doctors

My sister went along with my mother to the GP earlier, because of a bunch of minor symptoms that individually could be read as "she's getting old", but which we suspected meant the dosage for one of her conditions is too low. And it's a rare condition - 5/100,000 - that none of the practice doctors have shown signs of understanding before, leaving everything to the specialist, so she expected to have to argue.

Doctor "Yes, I think you're right, you should have had a follow-up appointment with the specialists months ago, I'm upping your dosage and writing to their secretary to get this sorted."

Thank god for doctors who read the notes in advance!

Current Mood: Still snotty

My GP's surgery has been nagging me to have a blood pressure test as I haven't had one in about five years, and they had a drop-in blood pressure testing clinic today so I went along.

I was caught out by the weather, which is unexpectedly hot and sticky, and even in just a t-shirt and body warmer I was overdressed, which didn't help. Plus their fold-away tables were too low for me to find a comfortable position to rest my arm - and if I chocked it up with my right hand my left hand started twitching uncontrollably, which was obviously concerning.

So I wasn't surprised when the reading came in high. But I wasn't really expecting it to be that high. And while it dropped on a couple of retests it was still in the make an appointment zone. So they started trying to work out if anything was pushing it up artificially:

Them: "Well, the heat and the stickiness won't help, what about medication?"

Me: "I'm on Butec, it's an opioid for pain relief."

Them: "Well, both that and the pain might push it up, so would a bunch of other things, like coffee and ..."

Me: "Oh, crap, I literally drank a full pint of coffee just before I came out." *Headdesk*

I just didn't think about it, I was having my lunch, needed a cold drink, and the cafetiere was a) half-full, b) had gone cold, and c) right next to me.

So hopefully that's all that's wrong. But I've still got a phone appointment for next week.

(Not that a phone appointment for checking blood pressure makes much sense).

Current Mood: Pressured
Current Location: Over-caffeinated

I had an over-the-phone medication review yesterday.

This was with a pharmacist my GP's surgery has now added to their team, so not only was it over the phone, it was with someone I've never met, and who obviously didn't know what my diagnosis was (she did eventually ask, but only well into the discussion).

Given the only medication I'm on is a strong opioid*, these things always go the same way - the medic tries to convince me I don't actually need it any more. It turns out this is an even easier argument for them to make when you're not sitting in a wheelchair in front of them.

So I was half-expecting to have to dig deep into symptoms and consequences, and I did.

After finally establishing that yes, I did indeed still have exactly the same levels of pain it was prescribed for, we then had the traditional pushing for alternatives, "Have you ever been referred to the pain management team?"

Yes, repeatedly, and they don't think I'll ever not need strong painkillers.

Which pretty much shut her down. And she then said the one thing to convince me she did have at least partial access to my notes by pretty much quoting my GP verbatim from the last one of these: "well, you're on the lowest dosage and it is working, so I suppose we can leave you on it."

So that's done for another year or two.

And then my hips started hurting, a lot.

I'm not certain it was entirely due to the meds review, not only was my pelvis visibly more rotated than it's been in a while, but yesterday was also the last day in that patch's theoretical 7-day duration and there's a bit of individual variability in how long they really last, but having to think about these things is never helpful for actually controlling how much pain you actually feel.

(I'm mostly fine today, possibly a bit stiffer than usual, but pain levels are relatively normal).

* In patch form, so <s>almost impossible</s> extremely difficullt to abuse.

Current Location: Under review
Current Music: Everybody Hurts, REM

FB Memory from 2011:

"Saw new spinal specialist last night, being sent for nerve-conduction tests, which are apparently done by a Professor Magnus -- I seem to have strayed into a plot from Sanctuary. Though if someone has to stick needles into me while yelling 'more power, Igor', then I guess Amanda Tapping is as good a choice as any!"

I'd completely forgotten when this was, I'd have said much earlier in the Oughties if I had to guess, and I'd utterly forgotten about "Sanctuary", which I rather liked.

(The actual test wasn't nearly as painful as nerve-conduction testing is normally reputed to be, but I felt the conclusion of "something's clearly not right" could have been more useful. And I didn't get to see "Professor Magnus, I got his deputy instead :( ).

Current Mood: Amused
Current Location: Not Sanctuary

I may have kicked my Kindle Fire into the bath. I thought I'd gotten away with it, but nope, it shut down later. Or at least the screen did, the rest of it, such as the alarm, still worked until the battery ran down. Try turning your alarm off when you can't see the icon to swipe....

At least I timed it right for Black Friday.

Had an appointment with my doctor this evening for a medication review, which is code for "we want to take your opioids away" (I'm only on one drug). Convinced Dr Singh(1) to wait six months back in the spring, didn't hold out much hope of keeping them this time, but this time the appointment was with Dr Singh(2) (I'm not certain if they're sisters or not) and we talked about my experience of pain, and what had worked and what hadn't, and at the end she said "I normally don't like keeping patients on opioids, but actually, you're the ideal candidate*."

Hurrah for doctors applying logic, not opiod hysteria!

* Low dosage, I haven't built up a tolerance, it works, most other things don't, and I did a test a couple of weeks ago to confirm my pain levels are still where they were when this was first prescribed by going cold turkey for four days (I intended going a full week but it hurt too much).

Current Mood: Klutzily relieved
Current Location: Diving for Fires

Just at the GP's to make an appointment, and took the chance to comment on the signage for their new 'type in your reg number or get fined £50/£85' parking scheme.

'You've got all those signs up on your chest high reception desk, but there's nothing here on the wheelchair height desk for someone like me to see'.

'Yes there is,' says the senior one, slightly butting in now she's dealt with the patient she was talking to. 'Hmm, where's it got to now, people keep moving it. Ah, there it is!' and she reaches off to the extreme opposite corner to where you're looking when facing them.

Well yes, it was there. But the first thing you did when you walked up to deal with your patient was move the big 40l samples container that sits on the desk between where I was and where the sign was!

They also commented the scheme was put in place in February and they're having to add more and more signs because people aren't seeing them. Don't think it's occurred to them that the problem isn't the number of signs, it's the sheer wall of text with the details of what you're supposed to do buried in the middle.

Current Mood: *headdesk*
Current Location: Beneath Notice

Despite my predictions of disaster, my long-distance controlled drug prescription renewal all went through without an issue and I had the filled prescription in my hand by 11AM the next morning. Which means I'm currently comfortable, rather than shivering my way through opioid withdrawal (last patch of the old prescription ran out overnight).

I strongly suspect both GP's surgeries were confused about the system (mine that it was possible at all, my mother's that it had changed in the past week), and that that's probably true of a lot of them across the country. Which isn't exactly reassuring.

Current Mood: Opiated
Current Location: Still where the heart is

I'm still in Durham.

My Mother's GP Surgery: No, you can't have an appointment to get a repeat prescription for a controlled drug, because the whole system just changed and your own surgery can do it electronically.

Me: They were pretty adamant they can't do that for controlled drugs when I talked to them a couple of months ago.

Mother's GP: It all changed just 2 weeks ago. Byee!

Me to My Own GP's Surgery: They said it all just changed and you can do it.

My Own GP's Surgery: I'm pretty sure they're wrong, I'll bet they're confused about the gabapentin thing*. Best we can do is give it a try and see if it works.

So I'm stuck in limbo, needing the repeat by Friday, and may end up sitting in Urgent Care/A&E just to get a repeat prescription (as opioid withdrawal is narrowly worse than sitting in A&E). And I just had to email my GP saying 'whoops, didn't think about your normal 48 hour turnaround, can you put a rush on that, pretty please.'

I said it would be a pain in the arse....

* I'll bet My GP's Surgery is right. Gabapentin and pregabalin were just made controlled drugs, effective this week, but because the pharmacists whinged, they don't have the same restrictions as normal controlled drugs, like my buprenorphine..

Current Mood: aggravated
Current Location: Neither here nor there

Or rather convincing my GP I need a wheelchair assessment from Wheelchair Services as a first step towards getting a wheelchair that actually meets my need as someone with HMS and fairly severe seating issues.

I have an appointment on Tuesday, which almost certainly means I'll get the older, somewhat lazy doctor with fixed ideas rather than the younger one with more modern, flexible attitudes (who mostly does Mondays and Fridays). The advantage is that she's known me for 25 years, the disadvantage is that she's known me through 25 years of misdiagnoses and I'm fairly certain she doesn't know what my actual diagnosis is. I'm not even certain my diagnosis is in my medical records as that came out of the Pain Clinic rather than rheumatology or ortho, I'll have to dig out the pain clinic letters and see what they said.

So, problem: convince an old-fashioned, lazy doctor on the verge of retirement that a wheelchair is a good thing.

Points to be made:
I'm doing this whatever happens, but I'd prefer to do it with the support of the specialists
I'm prepared to fund a suitable wheelchair myself (ouch!), because the chance of getting the appropriate set-up via Wheelchair Services is likely nil.
I'm already walking better because of the pain clinic, this has nothing to do with 'giving up walking'
Walking better is just showing all the things I've given up doing and still can't do, such as going in to London
I tried out a chair for 5 days at Worldcon, 5*14 hour days, no negative effects, normally a single seven hour day, or less, on my feet is likely to put me in bed for the next day or more.
Trying out Kaberett's chair convinced me that I need a properly fitted solution on a rigid (or fold to rigid) chair, not just a cheap folding manual. It was possibly the most comfortable I've been in 25 years.
Getting a chair may be a necessary precursor to getting back to work.
My arms are increasingly an issue. I now have parasthesia in my left arm almost 50% of the time, my right shoulder has started to sublux regularly, using crutches may mean I'm walking, but stresses my arms and shoulders. A wheelchair gives options, creates the ability to alternate between crutches and chair and just basically creates a back-up plan.

Am I missing anything obvious? All suggestions gratefully received.

Current Mood: pensive
Current Location: Flat on my back
Current Music: Imitation of Life, REM

My last couple of hospital appointments have left me wondering whether my consultants, and presumably consultants in general, might be becoming a teensy tad of a bit over-specialized.

When I saw Doctor B a couple of months ago he queried why I had been sent to see him, a shoulder specialist, when I actually had a neck problem. As I had to remind him, with everything manifesting it as shoulder and arm pain we didn’t know it was a neck problem until he’d diagnosed it as one – a diagnosis he had repeated only a couple of minutes before. Do try to keep up, Doctor! This was the same appointment that featured the confidence-inspiring:

Doctor B: Does Jenny do necks?

Nurse: Um, I think so….

Doctor B: We’ll send you to see her, then.

What happened to that referral I don’t know, and I know the paperwork existed because it was in my hand at one point, but I have been waiting for a follow-up appointment with Doctor B. Last week, after the disruption caused by the snow, I had a phone call from the hospital saying they were putting on an extra clinic and could I do an appointment in the morning?

So next morning I was there bright and early (having skirted the two week old puddle of black ice cunningly left ungritted in the middle of the disabled parking -- I had to wonder if they were trying to drum up extra business?), but strangely none of the treatment room doors showed any sign of Doctor B’s nameplate. So I waited, and I waited, and a suspiciously precise 30 minutes after my appointment was due I was called in, to see Doctor C. I had never met Doctor C before, he had never met me, but to give the man his due he did a thorough job of taking me through the scans of my c-spine and listened when I explained that, because I walk with crutches, anything affecting the use of my arms is even more of a problem than it usually is and it is that combination of symptoms and mobility that concerns me. I seemed to make as much progress in 5 minutes with him as in three or four appointments with Doctor B. Unfortunately that led us into the following:

Doctor C: So what you really need is someone to look at the top and bottom of your spine at the same time.

Me: Yes, exactly. That’s what I have been trying to get people to understand for the last year.

Doctor C: Unfortunately we don’t have anyone here who can do that.

Aargh! This is the Orthopaedics and Rheumatology department of a hospital serving nearly a quarter of a million people, and they don’t have anyone capable of looking at the entire spine? I’ve been sent back to my GP to ask for a referral to a spinal surgeon, not because I need surgery, but because no one else is apparently capable of looking at the entire spine at once. I couldn’t help noticing the board proudly announcing the specialities of the Orthopaedics and Rheumatology staff as I walked out: Doctor A: Knees, Doctor B: Shoulders, and so on, and it is as well that we have people who can focus on these areas, but somewhere along the line, the idea of treating ‘the whole patient’ seems to have slipped quietly overboard.

You see what I mean about over-specialized drones?

Current Mood: confused
Current Location: Winter Blunderland
Current Music: Windmills of my Mind

I saw my orthopaedic consultant about my shoulder/neck problems today, follow-up to the appointment I had at the end of August where he had me in and out in 5 minutes, told me there was no indication of anything wrong with my neck, referred me to physio and casually mentioned on the way out that the bone scan might not have shown anything on my neck, but it had shown problems with left wrist, right hip and both knees....

So this time I walked into his office, sat down in front of him and he started reading the year-old referral letter from my GP aloud.

I couldn't figure out what he was up to, but let him finish.

Me: "Well the last time I saw you..."
Him: "What, you aren't a new patient?"

So we then have several minutes where he hands my file back to his nurse to find the up-to-date notes (what, he can't do it himself?), and run through the same old 'why have you got crutches when you're seeing me about your neck' (answer, because disabled people get neck problems, too).

So back to the right place in my files he runs through it again, only this time it isn't 'nothing wrong' with my neck, it's bulging disks at C5 and C6 and narrowing of the foramina, which is what is causing the problems with my arms. Exactly the same set of scans as last time, completely different report. I'm less than impressed, I've had two months of wondering what the hell's going on if I don't have a C-spine problem to explain the neuro stuff, only for it to turn out to be exactly what I expected, but was told it wasn't.

He then got distracted by the fact the irritated nerves have now given me a frozen shoulder and told me he wasn't a fan of physio for it (despite the fact he'd already referred me and physio are now treating me for a frozen shoulder, not for anything else). I declined the offer of a cortisone injection or manipulation under general anaesthetic, for now at least, and we then had a mini-comedy routine:

Him: So if you have a neck problem why did you have a referral for a shoulder problem
Me: Because I keep getting problems in my arms.
Him: But that's not your shoulders, its your neck
Me: Yes, but we didn't know that!

(I actually thought it was at least partly c-spine from the start, my GP thought it was carpal tunnel syndrome, so I let her refer me to rheumatology on the assumption that a rheumatologist would have the initiative to deal with whichever joint the problem turned out to be with, but apparently they need more hand-holding than I'd assumed).

After several tries, and at the third visit, I finally got him to understand that my concern is not the problem that I have right this moment, but the fact I keep getting the problems and want to know how that's going to develop, because shoulder problems (even shoulder problems that are really neck problems) for someone who walks with crutches are a pretty fundamental issue.

So he decides maybe he should refer me to a surgeon to discuss possible developments and my options and turns to his nurse:

Him: "Does Mary do necks?"
Her: "Sometimes"

Really, really, calculated not to impress. I probably have actually got what I wanted at the third time of asking, but Dear God do they make you work for it!

Bah. doctors....

Current Mood: confused
Current Location: St Elsewhere
Current Music: Windmills of My Mind

Well, fear might be over-egging the pudding, but my uncertainty and doubt levels have definitely taken a shift for the worse, when I was expecting them to head in entirely the opposite direction.

For all I'm fairly obviously disabled I've never had a particularly precise diagnosis to go with it. Facet joint damage covers some of it, chronic pain other bits and my hypermobile hips definitely fit in somewhere, though I don't have the small joint laxity that's more typical of HMS. I've been relatively happy to live with that situation, comfortable I knew how my disability would react in most circumstances even if I don't have a convenient label for it -- mostly I say HMS. Then I started having shoulder problems, which for someone who is dependent on crutches is a wee bit worrying.

Despite the issues starting in 2007, they weren't consistent and it took me until December last year to arrange an appointment to have it looked at, prompted by the addition of pins-and-needles to the existing, but intermittent, pain and muscle cramps. At worst I assumed I'd end up with a clearer idea of what was going on. Then the snow came down and the appointment was put back to March. Of course by the time March came around I had had no symptoms for months. The new consultant was a mixed bag, he didn't let me finish a sentence in the whole appointment, even though I was supposed to be telling him all about it, but did seem otherwise competent and did manage to prod (literally) the problems into revealing themselves. He agreed with me it's probably a c-spine problem , so sent me off for the full scanner 3-for-1 special of X-ray, MRI and full body bone scan.

Last week (after two cancellations, one me, one them) I finally got the results from him. After flashing a whole load of X-ray and MRI pics past faster than I could follow, he announced that they and the bone scan didn't show anything at c-spine level. 'But,' he added, just before referring me for physio and kicking me out the room, 'the bone scan does show problems with your left wrist, right hip and both knees'. Now I understand it wasn't intended to be a long appointment, but labelling something as a problem without any details whatsoever is just a tad less than satisfying!

If he was going to throw in unrelated problem areas then I was expecting lumbar spine, pelvis, left hip, left knee and/or right ankle (the things that add up to me being disabled); right hip is an intermittent problem, right knee I usually label as the only joint that's never been a problem and left wrist isn't much behind it. I fully understand that showing as a problem on a scan isn't necessarily the same as definitely being a problem, but the potential is there and I'm surprised at how much it's thrown me off my metaphorical stride. I'd thought I was well adjusted to my situation, including the shoulder issues, but for someone reliant on crutches the potential of bilateral problems with shoulders, hips and knees, together with left wrist and right ankle isn't a reassuring one, yet that's what I'm left with for now. Fortunately the consultant does tend to write clearer reports to my GP, and copy me on them, so enlightenment may be coming my way by post in a week or so, but I can't help wishing it had come last week instead! At worst I can pin down the physio for some answers, but that appointment may be weeks or months away.

The moral of the story is that 1) even competent doctors still don't always think through the implications for the patient of what they're saying, and b) be careful what you wish for, Murphy may see to it that you get the opposite....

Current Mood: pensive
Current Location: Up in the air
Current Music: Another Mystery - Dar Williams