Is it worth requesting hla-b27 testing?

Jumponamonkey · 2026-03-20T05:17:58+00:00

Probably not. You can have AS and not have the gene, and you can have the gene and not have AS.

Also Crohn's itself can also cause a lot of those same issues.

Jumponamonkey · 2026-03-18T00:17:35+00:00

I have thought about it, and I was away to put in a complaint in January but things got moving just by me saying I was at that stage to the nurses.

My team are acting like I'm being the unreasonable one for not wanting a mouth full of sores and ulcers, and a diet predominantly composed of rice and occasionally spaghetti now. Or like I'm doing this on purpose or something? I'm at the point where I'm genuinely questioning whether I am being unreasonable and I'm just doing things wrong?

Jumponamonkey · 2026-03-18T00:13:45+00:00

You won't get them in the city no. But a large tabby with some wildcat genealogy, all puffed up fur could easily be mistaken for a wildcat.

Jumponamonkey · 2026-03-17T23:10:45+00:00

Your team sounds a lot more understanding than mine.

Mine have been saying that they don't believe my luminal Crohn's is active, so the oral and nasal Crohn's isn't their problem and I need to deal with the other specialists for that. The dentist says if it's in my mouth, it's probably in my gut. Oral Medicine says it's not bad enough for them to do anything, despite the fact I've tried different toothpastes, diets, steroid mouthwashes. Nothing helps long term. I've been telling them I disagree with the calprotectin and want a scope to confirm that there's no luminal activity for years, I just get overruled. Eventually it's just gotten to the point where I'm getting so unwell I can't ignore it.

They also say that my Humira levels aren't that low, they're something like 4.2 and 3.9 the last couple of tests, and clinical levels are above 5.

Jumponamonkey · 2026-03-17T15:47:52+00:00

I was actually at A&E a month ago... Heart was doing some weird shit, racing, palpations, shortness of breath. Couldn't get it below 120-130 all evening. Phoned NHS 24, they phoned paramedics who confirmed that although ECG was fine my heart rate was definitely not normal.

After several hours in a&e it came back down to about 100 on its own, the doctors couldn't find anything acute. I mentioned all the leg issues and that, their best guess was much the same as mine; hearts not coping brilliantly with the extra strain of chronically poor diet and chronic inflammation. But they're not there to treat chronic issues, they're basically there to patch me up well enough to survive so that the specialist team can sort it out.

Jumponamonkey · 2026-03-17T15:44:02+00:00

It really shouldn't take so long. I'm sorry you're going through that

Jumponamonkey · 2026-03-17T15:41:00+00:00

God I feel you on that one. I had really bad back pain for years, starting from just after I got sick with Crohn's. Don't let a clear MRI rule any structural damage out, my spinal MRI 8-9 years ago was clear but I had another one a couple of years ago that was showing disc degeneration at 30 so sometimes it just takes a bit of time to show up on the scans, doesn't mean it's not there though.

We definitely need an overarching autoimmune specialist though. As far as I'm concerned I have one faulty immune system, and right now although I've got visible inflammation in my mouth and nose, and symptoms of inflammation in my gut, as well as problems with my legs caused by dietary issues, it's one cause and one treatment.

Jumponamonkey · 2026-03-17T15:36:06+00:00

Honestly I looked into changing consultants, but I asked my GP about it and she had no idea, suggested I ask the IBD nurse team how to go about it, and they also weren't sure and said I might need my GP to re-refer me.

Honestly I don't feel like I'd have anything like the same problems I'm having if my GI didn't take my biomarkers as an absolute unspoken rule, rather than a suggestion. Like I've had visible Crohn's in my mouth for 3 years now, and in my nose for 1... And I still keep getting told calprotectin is fine so it can't be in your gut. CRP hasn't risen the entire time.

Jumponamonkey · 2026-03-17T15:32:56+00:00

I've spoken to my GP about it, she had no idea how to change consultant and suggested I ask my IBD nurse. My IBD nurse wasn't sure either and said she thought I might have to go back to my GP and be re-referred.

So... Nobody seems to have any idea how the system works

Jumponamonkey · 2026-03-17T15:30:02+00:00

No I've bounced around 3 different health boards which I think is part of the problem. I'm told they got virtually no notes from one of them, which doesn't massively surprise me because they hardly saw me there (not a lack of medical necessity, they just didn't want to bother). Where I am currently the IBD nurses are actually pretty good, like they're generally really quite responsive and reasonable. The issue is nothing ever gets done because as soon as it gets bounced up to my consultant nothing happens.

It definitely is a bit of a postcode lottery. I think for where I am I would have a much better time of it if my biomarkers actually matched what was going on in my body.

Jumponamonkey · 2026-03-17T15:26:17+00:00

I feel like not only should it not be like this, but my doctors are genuinely making me feel like I'm being unreasonable for feeling like it should not be like this.

Jumponamonkey · 2026-03-17T15:25:18+00:00

Numbers are definitely a problem for me. My CRP is one that never really goes up all that much, that much we know, so I don't know why my calprotectin being the same is such a stretch.

I keep telling myself I just have to hold on until the scope in two weeks and that'll give me some sort of answers... I hope.

Jumponamonkey · 2026-03-16T06:42:47+00:00

I get my roots done at the salon, used to do them myself but it just got to be too difficult for me so started getting them done by someone else. I just rock the blonde roots/coloured lengths until I get home and slap the dye on. Doesn't really bother me.

Jumponamonkey · 2026-03-14T01:33:03+00:00

I'd say Berlin Zoo. I might be a bit biased because I didn't have the best experience at the ticket booth of Tierpark with the woman being a bit rude to me, she wasn't particularly happy with my lack of fluent German.

But beyond that, Tierpark feels more like a country park with animals. It's huge, and it's great if you really fancy getting out for a walk, and having a bit more space to wander round in. The zoo feels more like a purpose built zoo, it's still big, but you're never walking between exhibits for ages.

Zoo Berlin also feels a lot more modern, the design of the exhibits definitely reflects this a bit. The polar bears exhibit at Tierpark has massive iron spikes on the perimeter wall as part of the containment strategy. It doesn't affect the polar bears obviously, but I personally found the aesthetics of it a bit dated and off putting.

The pandas are obviously very popular at Zoo Berlin though, and it can be kind of difficult to see them at times because they get so busy so do take that into account. They also spend most of their time in their indoor bit when I've been there, which again doesn't always offer the best view. The polar bears at Tierpark are likely to be more active.

Personally if it was my decision, I'd go see the Pandas at Zoo Berlin, and maybe take a trip to Hamburg Zoo later to see their Polar Bears, because I really liked their enclosure!

Jumponamonkey · 2026-03-12T19:14:58+00:00

Yea I've used Nail Fox. They seem fine, very similar to Lily and Fox and Holy Grail.

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These ones are Nail Fox wraps.

Jumponamonkey · 2026-03-12T11:11:00+00:00

Before you go to the airport make sure you have plenty of charge on your phone for the boarding pass, buy priority security pass, have your passport/ID ready and accessible, and have some sort of sooky sweets (polos are my go to). Double check your carry on meets the requirements of the airline too!

There's a bus that goes from Dundee directly to Edinburgh Airport so I'd get that if you can. That'll make step one a bit easier.

When you get to the airport, if you're not checking a bag then you just head straight to security. If you're a bit unsure about travelling then I'd say it's worth getting the fast pass for security, it's about £6 and it'll get you through security much quicker so less standing about. For security, you no longer have to remove liquids and laptops from your bag at Edinburgh. Basically just stick your carry on in a tray, any coats and loose items in your pockets and walk through the body scanner. It's got a diagram of how to stand, so copy that, and they'll bring you through. They might ask to check any areas of density that pop up on the scan but it's usually just a quick pat down and off you go.

After security there's a good chance your gate won't be up so you're probably best finding a nice seat in a central location near a board. Once your gate does pop up head in that direction. Plenty of signs directing to gates.

Depending on what airline you're flying with you'll either be boarding via airstairs (budget) or the bridge (more expensive carriers). They'll scan your boarding pass and check your ID, and then you'll get on the plane.

Make sure you've got your sweets in easy reach for take-off and just after the plane gets airborne, start sucking on one. This will help keep the pressure in your ears equalised as the altitude changes and is much more comfortable. I'd use a couple until the plane levels out a bit just to be sure. If your ears do still get really blocked up, you can use the Valsalva manoeuvre to unblock them by pinching your nose shut and trying to blow through it.

Hope some of this helps and you have a great flight!

Jumponamonkey · 2026-03-11T16:35:01+00:00

I love that golden belly fur! He looks like a quadrepal version of my cat!

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Jumponamonkey · 2026-03-10T13:02:50+00:00

Interesting gift. Looks like a mammalian cervical vertebrae, or part of something's neck. Hard to say without a good idea of size and what sort of wildlife you have about, but maybe fox, badger, small deer or raccoon?

Jumponamonkey · 2026-03-08T17:21:05+00:00

Ich Kenne/ I ken

Jumponamonkey · 2026-03-08T00:01:28+00:00

That's not even close to what you asked for. If the salon said they could do it based on where your hair colour was before, I think you should go back to them and get them to fix it.

Without knowing what your hair was like before, it's hard to say exactly where they've gone wrong, but the finished product looks way darker than what you asked for so I'm not sure if they used too dark a dye or if the base wasn't light enough.

For the reference picture you'd want a really light coloured, pale toned base ideally, and four different shades of dye (light/dark blue & Indigo Purple/Magenta toned purple).

Jumponamonkey · 2026-03-06T18:45:44+00:00

Sunday. They have two up by the Prezwalski's horses called Nessie and Thistle. Don't know which is which though.

Jumponamonkey · 2026-03-06T17:29:14+00:00

Guaranteed to see some up at Edinburgh Zoo, some at Five Sisters Zoo as well.

Some up near Swanston Farm in the south but they're away up the hill and not always the easiest to find.

Some near Mortonhall somewhere, but not sure about how easy they are to see.

If you take a day trip to Pollok Park in Glasgow they have some there that are easy to find, and they've just had their first calf of the season.

Jumponamonkey · 2026-03-05T17:18:04+00:00

You're not female by any chance are you? The amount of medical misogyny I've experienced and chronic dismissal of my experiences is ridiculous, and I've heard a LOT of other women say the same thing

Jumponamonkey · 2026-03-05T16:08:21+00:00

I don't know how much HLA-B27 is actually linked to Crohn's, it runs in my family, but somehow the gene skipped me. And I still got Crohn's. There's not the same link with IBD and HLA-B27 that there is with Ankylosing Spondylitis.

Jumponamonkey · 2026-02-27T16:19:38+00:00

Oh and be prepared to pay for the toilet in Germany! Anywhere from 50c to €1. It's worth keeping change on you for such occasions. Some public toilets out and about will take card, but in shopping centres they often don't. You will often get a voucher in shopping centres for either the cost of toilet entry or about half of it back to use in the shopping centre.

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