Hypermobility specialist appointment

One of the outcomes from my neuro-vascular/autonomic consultant appointment back in April was that the consultant referred me over to one of the top two hypermobility spec’s in the UK. They are to be found at the University College London Hospital (UCL) in Euston Road, London, UK. My referral came through very quickly and I was offered an appointment this September which actually came around far quicker than I thought it would. (I must be getting older if time is passing that quickly, either that or I am having a lot of fun 😉 ).

That hypermobility appointment was on Tuesday of this week.

I had been sent some forms to fill out in advance….

UCL q', circle symptoms

I circled 30 out of 48, and wrote a note against a further two. Most of my friends with autonomic dysfunction said they would have circled a similar amount of symptoms.

There was also this set of questions…

UCL q', delete as appropriateI only answered ‘yes’ to 4 of these. Although I can do ludicrous stretches with my legs, can bend over to put my palms on the floor without bending my knees and have sublaxation of my shoulders and kneecaps, I do not have any ‘double jointedness’. Most of my hypermobile friends answered ‘yes’ to more of these than I did.

So that was the preliminaries. Now for the appointment itself…

The appointment was for 9.30am. In London. I live on the south coast. Eek! So the alarm went off at 5am… Magic Dude and I saw the sunrise on the way..

Sunrise on the way to UCL

Once parked up and braced for the usual extortionate parking fees we headed off to UCL. After nearly passing out in the bathroom I sat in the high ceilinged entrance hall and found that I had a tall wall of modern art in front of me to look at while I waited for the world to settle back into place…

UCL wall art

As we were fortunate enough to not get to caught up in too much rush-hour traffic we headed straight to the canteen for a coffee for him and a cuppa for me. As a long-time Tea Fiend I was a little disappointed with the size of my teacup! 😉

UCL coffee and tea

As with the neuro appointment, the appointment time given in the letter was not actually the time I would be seeing the consultant as they tend to take some tests beforehand. Here I was weighed, my height was measured and I was asked to head off to the loos to produce a urine sample for testing. There was nothing untoward in the urine sample but then again they didn’t forewarn me to hold it in for a decent first-wee-of-the-day sample so they didn’t really have much to work with! ;-P

Then the next stage was to see the consultant.

Consultant appointments for those of us with multiple aspects to our conditions basically means discussing only the aspects which fall into their specialist area. I had seen the neuro consultant, had the autonomic tests related to that and now I was with a rheumatology/hypermobility expert to discuss only musculo-skeletal issues. It can be pretty frustrating having to work in this way when we are used to the fact that everything is interrelated, but it’s just the way it is, they cannot make guesses outside of their area of expertise. They can, however, refer us on if need be.

So… I saw a super professional expert who began by finding out parts of my medical history that related to the injury that caused my CRPS and how the disease developed and spread through my body. A ‘what happened when’ question and answer session to help them build up a picture. As hypermobility can also cause issues with the autonomic nervous system (ANS) I was hoping that she could have some insights on the autonomic hassles I’m currently experiencing, but she was focusing on musculo-skeletal issues only so that is being dealt with separately (and I will write a separate post about that side of things).

I was twisted round, bent over, asked to walk up and down the room, had my skin pulled and all sorts! But the consultant was incredibly gentle and careful. I experienced no exacerbated pain from her assessment.

The outcome was that I have localised hypermobility in my trunk. It’s possible that it is so localised partly because I have worked so hard at the physio’ generally but have lost some core strength owing to near-fainting (as it has prevented me from doing any abs-strengthening exercises for some time). As usual I was told that I was doing all the right things and that there was not much more that could be done because I’ve covered it all so well.

The suggestions that will be in the letter that gets sent to my doctor will be:

– a very small dose of amitriptaline a couple of hours before bed. The reason for this is to help me to get better quality of sleep which should impact positively on pain levels etc, and the reason the dose has to be so small is that it interacts badly with SSRIs (which I am currently taking to help stabilise my ANS). I will, of course, do some research on this before I have an appointment with my doctor to discuss it.

– aqua-aerobics. The reason being that the Tai Chi is fab’ physio’, but that the non-weight bearing of being in the water could help other aspects as well. (The original suggestion was swimming, but I can only thrash and sink so the aerobics enables my feet to stay on the ground! 😉 ) The simple problems here will be cost in finances and managing to get out of the house for more of my physio’s, plus cold hurts my body and swimming pools tend not to be very warm. Could be tricky, I’m gonna put this one lower down the list of priorities and work down the list towards it.

– that I am referred to a TMJ (temporomandibular joint disorder) specialist regarding my jaw problems (which are currently being exacerbated by my meds and this is part of what I will be writing about in another post very soon).

In addition to these suggestions I was sent for a blood test and an x-ray to give her more information on my health status.

The x-ray was specifically for the consultant to see if I have shallow hip joints (which I’ve been told before that I have, and it also runs in the family).

The bloods will cover a lot of angles, including B12 and vitamin D, and is even checking for low levels in certain things owing to me being a veggie. Pretty thorough, eh?

The overall experience was one of efficiency and care. Who could ask for more, eh? I’ve had some pretty awful experiences with hospitals over the years but this one had systems in place to cover everything that I needed that day. I commented to the radiologist about how efficient everyone had been and she chuckled saying “Really? You should have been here yesterday!”. Sounds like I was lucky enough to be there on a quiet day! 😀

UCL day, tea after blood test

Mulling the appointment over tea afterwards, Magic Dude said that the appointment wasn’t what he expected. He had been expecting some sort of advice or treatment that could help with my day-to-day experiences and pain levels. He was not prepared for a patient in need of help getting the ‘you’re doing great’ response.

I, on the other hand, have a habit of hoping for the best and preparing for the worst! My hopes for consultant appointment outcomes are generally to get more info’ and understanding on what and why. I’m basically looking for clarification. After all, it’s me at the centre of my healthcare – I’m the only one doing the multi-specialist thing in the middle. So it’s important that I learn more about what’s happening in my body to be able to explain it to other medical practitioners and piece it together with my existing understanding.

Essentially I’m looking for more pieces of the puzzle that will help reveal more of the picture. I’m used to dealing with surprised consultants trying to find out how on earth I know so much and I’m used to being told that I’m doing pretty much everything I can already. But I’m in this for the long-term haul, every snippet of info’ and advice counts, this is how I help myself when all the usual treatment suggestions are moot.

UCL hospital

Bye bye UCL hospital

If anything progresses from this appointment I will let you know. I know that several readers are heading towards hypermobility assessments as well so good luck on your journey, I hope that this helps prepare you a little.

x

What I take with me to my doctors appointments

Time and again I have been told by specialists that I am an ‘expert patient’ and, more surprisingly, that I know more about my condition than they do. It’s taken a while for that to truly sink in. But now that it has, I accept the reality and I take control of my end of the communication. It makes sense that I should be able to communicate what I want to. There is no reason not to pass on valid information that will help the doctor to make a more informed decision as it could directly affect my health in a really good way if I do.

Doctors are there to help us, but frontline primary care doctors are trained in general medical knowledge. They have general knowledge about a lot of things so that they can treat us when they can, and refer us on to a more specialist practitioner when it goes beyond their training. In the UK they are called General Practitioners (G.P.s) for that very reason. They can’t know everything about every condition; it just isn’t viable to cram that much knowledge into one human’s brain!

I’ve found that some G.P.s know a bit about my condition, and when I have asked them about it they have always said that they only know anything because they happen to have worked with another patient with the same condition before. And they always say that their first patient with the condition was a huge learning curve for them. So if I’m going to see a doctor who I haven’t seen before I take information with me explaining what my condition actually is.

This is because rare conditions remain on the outskirts with the very-specialists. The new research information just doesn’t reach general practitioners, and why would it? It’s way too specialist for them to keep up with in addition to everything else they have to know and keep updated on already.

It also doesn’t reach doctors who are specialists in other areas. My cardiologist didn’t know as much about my condition as it first appeared, (only the cardio’ aspects and some of the basic ANS involvement), and he very candidly advised me that if I saw a neurologist or gastro-intestinal specialist, that they would not know, either.

So whoever I go to see, I know that they will not have the full picture.

So I can’t expect them to treat me appropriately unless I give them more information.

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The main thing I always remember is….

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Doctors like data.

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It helps them to make informed decisions.

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So it’s simple….

I take data with me.

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Let’s face it, if it’s taken me years to sift through the information online and find out what’s current, what’s outdated, what’s correct and what’s faulty interpretation… then I can’t expect them to figure it out in just a ten minute appointment! So, written information for them to look at is really helpful for them and usually very much appreciated. Not to mention hugely helpful to me in getting treatment appropriate to my condition.

But how best to present this information? Verbally? Take notes with me and give a mini-presentation? In writing? And if so, written by me? Or by some doctor or researcher?

I have had the dubious honour of being the first CRPS patient for various G.P.s over the years. And as a result I’ve come to the conclusion that it’s easier to hand them some information in writing than to try and explain it all myself verbally, (preferably with some sort of scientific journal reference or a web address link to show official endorsement from a relevant medically informed group). Firstly because doctors are trained in facts, and patients’ anecdotes just don’t carry the same scientific weight, (that’s why the scientific references/endorsements are helpful). And secondly because a few doctors sometimes forget that an ‘expert patient’ is actually very helpful, (hence the references/endorsements, again). The scientific references are therefore doubly useful because they present hardcore facts and they scientifically back-up what you are saying to them.

So, I always take an explanation of my condition with me to any appointments with new doctors. I no longer need to do this with my G.P. because he now has the general gist of CRPS and its association with the autonomic nervous system.

But if I am seeing my G.P., or any other doctor, about specific symptoms or ‘interesting’ new developments, then I need to take a little more with me.

I’ve started to back up everything I say with data, because the condition is so unusual when compared with standard medical training. Doctors are used to anomalous issues with organs, but not very familiar with what can go awry when the organs are happy and healthy but the wiring between them and the brain is seriously faulty.

So when I needed to see my doctor about the permanent near-fainting, constant nausea, and disturbing cognitive deficits I gathered information before I went. In fact I did four things…

1. I made a list of all of the symptoms which I was experiencing. I then organised them with the most problematic ones right at the top of the page. Nice and clear. It is useful for the doctor to have it to hand so that they can read and re-read the salient points without having to keep information in their head whilst asking me questions and considering my answers.

2. I also printed off some research papers that I thought might help my doctor as they explained about these sorts of symptoms with my condition. (Never forgetting of course that the symptoms could be something different, I never self-diagnose, that would be very silly as I don’t have the medical training, I simply gather relevant information for the doctor as I do know rather a lot about my condition, and then we discuss what we think it might be and how to move forward from there). So I had printed off a copy of a research paper about fainting being common in patients with CRPS, which included an explanation as to why this is, (faulty ANS doesn’t constrict the blood vessels properly in my legs so when I stand, and sometimes even when I sit, the vessels are too wide and so it takes more blood to fill them up, meaning there just isn’t enough blood left in my upper body including my poor bereft and foggy brain!), and I also took a printoff of a research paper about neurological deficits in patients with CRPS (although this is more general and my cognitive issues appear to be more related to lack of oxygen, but it was as a back-up in case he didn’t know about the effects of ANS malfunction on the vascular system or common CRPS neurological issues, I try to cover all the possible scenarios!). As it turned out I didn’t need either of them, but they were there as back-up all the same. I’ve since shown the papers to my respiratory physio’ instead, who loves new information and was very interested to read them.

3. I also created a list of the symptoms that were causing the biggest problems and at the end of each day I scored my day’s experience of them on a scale of 1-10. I used the basic 10 point pain scale as a guide. Well actually I combined three different descriptions of the same pain scale as they were different ways of describing the same thing! Even though it’s an effectively subjective scale I wanted to express my pain levels as coherently and ‘accurately’ as possible. Here’s what I used…

0 No pain
1 Mild Pain – can be ignored Bearable Mild pain, annoying, nagging
2 Mild Pain – can be ignored
3 Moderate pain – interferes with tasks Mildly painful Discomforting, troublesome, nauseating, gruelling, numbing
4 Moderate pain – interferes with tasks
5 Moderate pain – interferes with concentration Painful Distressing, miserable, agonising, gnawing
6 Moderate pain – interferes with concentration
7 Moderate pain – interferes with concentration Very painful Intense, dreadful, horrible, vicious, cramping
8 Severe pain – interferes with basic needs
9 Severe pain – interferes with basic needs Excruciatingly painful Excruciating, unbearable, torturing, crushing
10 Excruciating pain – cannot function

When symptoms were not pain-based I found that the references to interference with tasks/concentration/basic functions was very helpful at placing my symptoms on a scale.

And as I have a laptop to hand I even created a graph of this info’!

Having a visual presentation of data often shows up patterns we may not have spotted before as well as being a really time-saving way of explaining what’s been happening. If nothing else it’s a really easy way to see how big an issue certain symptoms were, like the near-syncope (near-fainting), which never went below a 5 during the time I was logging the data.

4. I also wrote down and printed off my thoughts on the matter, just in case I jumbled up my words on the day. And I actually ended up just handing it over for him to read. Easy peasy!

And do you know what? My offprints seem to have done the rounds! Originally I saw a locum doctor whilst my doc’ was away. The head doc’ paused the referral until I saw my own doctor, then by the time I saw my doc’ he’d already been shown my printed data. And it turned out that when the referral was made, my symptom list, graphs and summation of my thoughts were all sent off to the neurologist with the letter referring me to him, as they thought it would be helpful for him to see the offprints, as well. Wow! They really were useful!

The one thing that I was really worried about was the length of time it would take me to get referred to a neuro’, who I would then get an appointment with, who would see me and realise it’s not his area, and then (hopefully) refer me to an autonomic specialist, who I’d then have to wait for an appointment with…..

With the symptoms being as severe as they were I was worried about having to endure two separate waiting times to eventually see the appropriate specialist. But…. the offprints gave the neuro’ a lot of information without him actually having to see me in person, and he just wrote a letter to my G.P. suggesting that I get referred to an autonomic specialist instead. It turns out that that’s enough for the primary doctors to go on. The referral is underway. And waaaay quicker than it would have been otherwise.

So hurrah for my new habit of taking info’ to the doctor! It has made a massive difference, and shall be my new way of working from now on.

x