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Autoimmune disease

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Original poster

Posterior uveitis, hlab27 and raised serum ace

16 replies

Fipfop · 25/03/2023 07:12

Anyone have any experience with these. I have a genetics opthalmology appointment on Monday so want to be as prepared as possible.

Had been experiencing lots of flashes and floaters, had an emergency opthalmology appointment where they discovered a white dot syndrome (posterior uveitis). Blood tests have shown raised serum ace and hlab27. Also have an mri next week.

Additionally I have had some pins and needles in hands/ arm and big toe, heaviness on one side of my mouth, dizziness, I have ibs but this has been under control for a few years, I have some aches in joints but have hyper mobility and small children so have been putting it down to that, had an episode of bradycardia and high bp lasting a few days 6 months ago, crawling feeling in scalp, difficulty starting urinating sometimes or emptying bladder fully.

I do feel that none of my symptoms are very dramatic and not sure if they're just coincidence but I keep getting asked about these things. I am being seen by opthalmology, neurology and waiting on rheumatology.

Anyone with similar symptoms? What was your diagnosis.

OP posts:

nancyglancy · 29/03/2023 21:20

Are they thinking ankylosing spondylitis? I have AS. Had uveitis a few times. See the Nass website.

Restlessinthenorth · 29/03/2023 21:32

I had recurrent bouts of horrific uveitis in both eyes. Treatment was a nightmare, I didn't respond well and ended up with medication induced glaucoma. Turns out I had undetected TB which sent my immune system haywire. Once the TB was treated I have been clear of uveitis for some years. Good friend has AS and has bouts of uveitis.

Original poster

Fipfop · 30/03/2023 20:21

@nancyglancy AS has been mentioned however I don't really think I have symptoms of it. They are thinking something autoimmune though.

@Restlessinthenorth luckily they have tested for TB. That sounds really bad! Glad you're symptom free now.

I've now had further testing and they think there are 2 autoimmune things going on with my eyes, MEWDS and retinal vasculitis. But don't really know whats causing it.

OP posts:

nancyglancy · 08/04/2023 07:13

How did you get on @Fipfop ? Any further forward?

Original poster

Fipfop · 08/04/2023 07:37

@nancyglancy my mri has come back clear which is great. I'm trying to get hold of some blood test results that could indicate whether the vasculitis is systemic. And a rheumatology appointment in June. Still getting the odd flash in my eye but it's definitely not as bad as it was. Not really any further on with knowing what's going on though!

OP posts:

AndAllOurYesterdays · 08/04/2023 07:48

I have recurrent anterior uveitis and AS and am HLAB27+. My experience is that the NHS is great at treating the immediate symptoms but it's harder to get someone to look at autoimmune issues holistically

Original poster

Fipfop · 08/04/2023 08:35

@AndAllOurYesterdays I'm having the same problem really, although still early days. No one really seems to want to take responsibility for me

OP posts:

nancyglancy · 08/04/2023 09:48

That's good news on the mri. For my AS diagnosis there were clear changes. I agree, joined up care is poor with autoimmune stuff. Stress is the biggest cause of flare for me.

Original poster

Fipfop · 08/04/2023 12:45

@nancyglancy so my mri was head and orbit, would AS changes have shown on there or was it spine mri you had?

OP posts:

nancyglancy · 08/04/2023 15:13

It was spine. Showed inflammation in my sacroiliac joint.

Smood · 13/04/2023 12:47

Can I ask how long did it take for you to get your HLA-B27 results?

nancyglancy · 13/04/2023 15:57

I think it took mine about a month to come back. I had to chat for the result.

nancyglancy · 13/04/2023 15:58

Chase not chat

Original poster

Fipfop · 13/04/2023 16:00

Was a few weeks for me too. No one called me though, I had a neurology appointment and he checked them for me. Even though opthalmology did the tests. Definitely worth chasing

OP posts:

Smood · 13/04/2023 16:04

Thanks I had my test done on the 15th march, but no results in yet.

TedLasto · 24/04/2023 15:29

I have recurrent iritis and HLA B-27 positive. Also have recurrent lower back pain. Had an x ray which showed no AS but they blamed on scoliosis (would pain come and go/ be in flares with scoliosis?) I have read that sometimes it only shows up on MRI. At the same time I have other symptoms such as dry eyes, difficulty swallowing, cold hands...tested positive for ANA and am anaemic. So finally got a referral to rheumatologist today - this time for suspected sjogrens but I don't know if that also explains the iritis and back pain. Anyway yes seems to be difficult getting a diagnosis - all this has been going on for 20 years with more symptoms appearing as the years go by! Good luck.

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