The lead-up to your first rheumatology appointment can be a little scary or overwhelming, if you don’t know what to expect.

What will your rheumatologist be like? What tests will they want to run? Are they going to push a certain medication onto you?

But it can also be the start of something amazing and that’s the focus of this podcast.

In this episode, I look at what the process is like for getting an ankylosing spondylitis diagnosis, why you don’t need to be scared in the slightest and how to best prepare yourself. While I give my experience with getting a diagnosis for ankylosing spondylitis (which I have), the principles I describe are similar for any autoimmune disease.

✔️ What to expect from your first appointment
✔️ Getting into the best possible mindset
✔️ How to prepare so that you get the most out of it

Disclaimer: Please note, this is for informational purposes only. Gut Heroes does not offer medical advice. We are all different and what works for me may not work for you. I setup Gut Heroes to share information with you. To shine a light on my own personal discoveries (as I currently understand them) and to help you with your own personal research.

Transcript of this Episode

Today I wanted to speak about rheumatology appointments, specifically that first one, but just appointments in general. I want to talk about what to expect, how to best prepare, and how to truly get the most out of that appointment. From my own personal experience, I know it can be something that causes anxiety, especially before your first one.

There’s a feeling that they won’t understand or that you’ll be overwhelmed with information or that they’ll try to push a particular medication onto you. We can catastrophise prior to going in. One of the wonderful things about modern technology is that we can go online, join groups and forums. However, we come in, not burdened with, but with heads full of all this information – it’s quite overwhelming to process that yourself.

There’s an expectation which is put onto this appointment with what is effectively a stranger and a very short period. It’s a lot to deal with. You might wonder what they’ll say or do.

Will they force you to take some medication? Will they give you the right medication? If you’re trying diet and exercise and other things to manage a condition, will they say you can’t do that? Will they belittle you or make you feel small?

These are just some of the thoughts that can run through our heads. We can ruminate about them. It is really normal and natural. Understanding and being aware of that can be really freeing.

If it means anything to you, I had all these thoughts swimming around. I’ve had mixed bag appointments and really good ones. Knowing what I know now, I have many things I would say to anyone going to their first appointment or a new rheumatologist, which is this podcast’s purpose.

I might start with what you can expect initially from that first rheumatology appointment. Obviously, different healthcare systems will have different routes to diagnosis. But specifically with ankylosing spondylitis, you probably saw a primary care doctor or GP who helped narrow down what it might be. Hopefully, they sent you for some tests, typically including a blood test, perhaps some x-rays, if you’re lucky, an MRI scan. The results of those things will have caused them to refer you to your rheumatologist.

Rheumatologists are specialist doctors who diagnose and help manage chronic inflammatory conditions such as rheumatoid arthritis, ankylosing spondylitis and so on. With ankylosing spondylitis, they’re primarily looking for three things.

The first is a genetic marker – they’ll do a blood test looking for a gene variant called HLA-B27. If you have that variant, there’s a much higher likelihood that you have ankylosing spondylitis if you’re presenting with all the other symptoms, such as back pain, stiffness, sacroiliac joint pain, joint pain, and possibly skin conditions. They sometimes mention IBS.

If you have this gene, it’s a strong indication to them that you may have AS. It doesn’t mean that if you don’t have this gene variant, you don’t have AS – around 5-10% of people with AS do not have the gene variant, but 90-95% do. It’s a big tick for them, so they’ll typically have that blood test result with them.

The second thing is they’ll often have another blood test looking for inflammatory markers. In layman’s terms, this looks at when your body’s immune system is fighting something, as you have raised inflammatory markers.

Two of these are called ESR and CRP. If these are higher than normal, it’s another indication that your immune system is behaving differently, even if you don’t have a cold or flu. These markers are often high with chronic conditions such as ankylosing spondylitis.

Then you have the visual confirmations – the first is x-rays and the second is an MRI scan. X-rays will show any potential bone damage or fusing, or bone growing over bone. These are things that happen when the immune system attacks areas of the body and causes scarring.

When there’s scarring, new bone tissue forms as it attempts to heal. This can eventually bridge gaps between vertebrae and fuse sections together, causing longer-term impacts of AS such as lack of movement, curved sections, or a hunched posture.

More often than not, the confirmation for ankylosing spondylitis is to have an MRI scan as this will give a detailed way of seeing inflammation in those areas most commonly associated with ankylosing spondylitis.

Different healthcare systems and doctors may come around to these diagnostic tests in different orders. Don’t worry if you’ve had one and not the other. In my case, my GP immediately sent off for both the blood tests and x-rays, so that information was there for the rheumatologist. However, the x-rays didn’t make it to them, which was frustrating. The rheumatologist ordered a batch while I was there, and I went back and saw him 15 minutes after. He then ordered the MRI scan.

I know others who’ve had the MRI scan done before seeing their rheumatologist. Some will get the diagnosis right there and then, while others might need the rheumatologist to do detective work to get that final confirmation. If you’re worrying about how the diagnosis works, I hope this helps.

If you’re thinking, “Oh my goodness, this is a scary disease, what am I going to do?”, I would flip that switch. It’s not meant to sound glib – it’s meant to give you freedom and closure. Not knowing you have something and slowly getting worse, going from horrible pains to crippling pain almost all the time and not knowing what’s causing it is horrendous – a life sentence. I am here to tell you that it is very possible to live a normal life with ankylosing spondylitis. I really didn’t think it was possible until I tried the things I was doing.

As I’ve said before, I’m not even taking any medication. It might be different for you – you might find real benefit taking an immunosuppressant, and that could be you. You might respond incredibly well to diet, like me and thousands of others, giving you an incredible lease of life. Either way, whatever you do, this is the start of your life.

The horrible steady decline you’ve experienced through this mystery illness, which is cruel and seems to strike at random, stops you doing things you love, makes you feel grouchy, in pain and tired – now you’re finally going to get an answer. You’re going to get something where you can work on it.

There’s tons of information out there; I’ll share as much as I can with you. I hope that together we can get you to where I am today – 90 or 95% flare free. But regardless, things cannot get any worse than battling AS and not knowing what it is, just this horrible mystery pain that gets worse and worse. Now you have information at your fingertips and support, and things that will definitely help, whether through diet and exercise, biologics or immunosuppressants, or a combination.

With Gut Heroes, I’ll focus on diet because I’m passionate about gut and microbiome health, but it’s important that everyone makes their own decisions and we respect the amazing work going on in medicine.

That’s the diagnosis part, and how I would mentally frame what you’re going to get. You’ve been through hell, now you’re finally going to get answers and be able to work on it. Hopefully soon, you’ll be able to do the things you love, feeling different, with more energy, clarity, flexibility and movement – that has to be worth celebrating.

When seeing a rheumatologist or healthcare provider, we can catastrophise and feel like they don’t understand or have our best interests at heart. Like with anything, you get competent humans, good humans, and less good ones – amazing on a certain day and tired and inefficient on another. That’s just the nature of things.

The majority of doctors are doing their best with an amazing body of knowledge, able to see the biology of someone in a more holistic way than someone Googling a specific condition. It’s important to listen because they are on your side.

Obviously, they’re restricted by time limits, resources and what they’ve learned. As long as you know that, the ball is in your court. If you’re in the UK, US, Australia or most of Europe, you have a choice. It’s possible you might get a rheumatologist you don’t gel with, and that’s okay – you can change and get a different one. You can say afterwards that you want a different appointment.

They cannot force treatment on you, so if you’ve been using diet to manage your AS successfully and safely, and you don’t want biologics or immunosuppressants, you can say that. They won’t force medication you don’t want – that’s not allowed.

Have confidence in yourself, but keep an open mind. Talk to them – imagine they are on your side rather than assuming they are not. If they are difficult, you can push back. The best way is to be prepared, which is what I’ll talk about next. It’s good mentally before an appointment, for doctors too. It preps you, primes you to understand what you’re trying to achieve and how you can help your rheumatologist for future appointments.

The first thing is to have all communication, test results and letters printed out.

What I do is have a little folder with those see-through sheets where you can put information. Have any correspondence in there.

Then have a document with a timeline of everything – the diagnostic tests, the name of the GP or rheumatologist, the date, and the results themselves. When they give you results, like your blood inflammatory markers, if they haven’t written them down, ask – “What was my CRP rating?” Write that down with the date, and the same for your ESR and whether you’re HLA-B27 positive.

Write down any notes from x-rays or MRI scans. It will probably only take up one A4 sheet but means you have all that information at a glance and won’t be overwhelmed. My first appointment was shambolic from the hospital’s end because he didn’t have almost any of my results.

The only reason he knew about my HLA-B27 gene was because I had my sheet of paper. The moment I read that out, he said I definitely needed an MRI scan – having that little bit of preparation made all the difference.

I also recommend having another bit of paper with a timeline of your symptoms over the years. When put on the spot somewhere like a doctor’s surgery with a stranger, my mind always draws a blank because you know you’re in there for a limited time. They’re typically time-poor, looking at their screen, and you’re scratching your head trying to remember when things happened or how you felt.

Do that at home in your leisure and have a think: when did you start getting lower back symptoms? Where was it? Did you have any other symptoms?

Write down anything to do with the sacroiliac joint – they’ll ask about recency, so when was your last flare? How would you rate that pain out of 10? How many times a year do you get flares?

These are things they’ll ask using something like the Bath Scale out of 10 in the UK. They’ll also ask about stiffness – in the morning, how long does it last typically? Rate the severity.

Think about that in advance and write it down. Also, list anything relevant like skin conditions, dry skin, psoriasis, rib pain, other joint pain, neck pain. They’re often interested in gut problems like IBS or IBD, so mention those if applicable. Have that in a list to rattle off – it will really help. So those are things that will hopefully mean you go into the appointment feeling confident and prepared, not caught out or like you’ve left something out.

Most importantly, have a list of things you want to ask. What medications do you want to know more about? What are they able to offer you – the pros and cons? Are they happy for you to work on diet to help? If they’ve heard of the diet, amazing.

If not, don’t worry – they’re only human.

Help nudge them in the right direction: “I know this hasn’t come on the health system’s radar yet. This was tested very successfully in the NHS, particularly in the 80s, 90s and early 2000s, and here are some study names if you’re interested. Here is how it works, what my diet might look like. I’d really like to try that – are you happy for me to pursue it?”

Remember, you are in control.

If they really push back or are unreasonable, bear in mind you’ve done your homework and they might be wrong or lack information.

Have confidence in that – there are rheumatologists who will support you.

I’ve personally had four. The first one thought diet was nonsense, so I didn’t see him again (I was going on the NHS anyway). The next had never heard of it but wrote down study names and a forum I’d been using – he was really supportive. The third was quite dismissive but said if I was okay, she wouldn’t prescribe medication. The most recent was amazing – she hadn’t heard of it personally but was very interested and got me an MRI scan and prescription I’d asked for.

Especially if following the diet route, I recommend asking them to keep monitoring things.

With all my rheumatologists, I had to push for blood inflammatory marker tests and say I wanted x-rays or MRI scans periodically to ensure things weren’t getting worse or if there were improvements – I really wanted to make sure what I was doing worked.

They always let me do the blood tests and were happy for x-rays. MRIs are trickier as they’re expensive on a free healthcare system, but if you get the right one and are respectful but firm, you can get that done too. It depends where you are, but my appointments are once a year, so it’s not a big deal getting an annual blood test, x-ray or MRI, especially in early stages when it’s good to stay on top of things and have data.

If you’re feeling anxious or overwhelmed, remember you’re not alone.

There are wonderful support groups – the Kick AS Forum, the Low Starch Facebook group, my website which I hope is helpful, and others on my resource page.

You will make this work and things will improve.

A good idea is to have an advocate with you, especially if you’re younger, as it can be difficult to have confidence talking to authority figures. As I’ve got older, I’ve realised that while they deserve enormous respect and I will always listen and take advice on board, they’re not perfect – just human beings with wonderful knowledge. You know your body best, are able to do research, and if it’s good and you can test things safely like diet, that is really powerful. Consider bringing a friend, parent or sibling – someone who has your back and can be in that appointment.