I just wanted to share that I went for a nailfold capillarscope test on Monday at my local hospital Stepping Hill , I had been contacted a few weeks prior to ask would I take part In This research. The end goal is to be able to facilitate capillarscope in our local hospital rhematology departments. Saving waiting time ,hopefully money and possible aiding earlier diagnosis.
The nurse used the scope and was I understand directed by on screen prompts as to where to move the scope across the nailfold, the photos are taken by the computer AI when it thinks the best pictures are available. The pictures then go to the local scleroderma / Raynauds centre to be checked and interpreted.
Unfortunately I won’t receive any results from this test as it is for the purpose of research and checking how well the computer AI programme works and how usable it will be in clinics.
I believe there may also be a group session in the future to discuss how we felt the test was for individuals.
I Don’t know how many other hospitals/members are taking part, but I thought anything that can make the test more accessible in the future would be helpful.It maybe a way down the line but it sounds like, It could be a step in the right direction to easier access to testing.
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Buttsy
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Thank you for this. It’s very interesting. I had the old fashioned non-AI version carried out some years ago and it seemed new then. I got to see early deviations in the capillaries for myself and about four years ago I saw the capillaries were zonked.
Using AI seems like they’d be able to see changes far earlier than with the naked eye, which much better than waiting for them to be obvious even to an untrained eye.
To be honest, I could only tell at first from my consultant pointing at some capillaries (which were larger) for his students to see. At my last test the pattern was very different. The capillaries had reduced in number and the ones left were much wider and wigglier ( not a medical term)!
This sounds a really great use of AI and would make diagnosis so much easier at our local Rheumatology units. I had the screening procedure at the Royal Free sometime after I had the LSSc diagnosis and I found it very interesting, but I can see my damaged capillaries myself. Let's hope the research results are good and in a few years, I suspect it will take a while, it could be a real step up on the road to diagnosis. Good news.
Thank you for this interesting post. I’ve never had one of these and often wondered if they are just for diagnostic purposes or if we could all benefit from having them to check the severity of the disease. Had you ever had one before?
Yes I have had 2 before, one at Salford hospital and one at the Royal free earlier this year , I did notice some difference from my last one but like I said previously not sure what that signifies.
they didn’t tell me any result as the research is to see how well the AI works , not to inform me.
On previous capillary test they just said wether it indicated wether you might have systemic sclerosis . Nothing about repair. Sorry I don’t have the information your after.
I applaud you for helping to advance medicine technology/progress. You have done a great thing to help everyone.
It has to begin somewhere; who knows maybe this technique will be used across the spectrum of ailments so there will not be such long wait times to be seen for diagnosis which will speed up procedure times too. 😊
Thanks hun so much from all of us out here who can’t or don’t have the opportunity to volunteer for whatever reason.
Hi Buttsy, Well done you for taking part in this research, unfortunately it doesn’t help you but many people in the future will benefit. Stepping Hill used to be my local hospital and I always found it good, they seem to do quite a lot of research in many disciplines. I had a strange occurrence once when I was on the cardiac ward (it may have moved since then). I dreamt that the ward was full of newborn babies. In conversation with the nurse the next morning I mentioned my dream and how vivid it had been, I remember describing how the cots were lined up. The nurse who must have been near retirement age then told me that the ward had indeed once been a maternity ward many many years ago and that the cots were lined up exactly as I described, so strange!
it is very good that your hospital are undertaking this research and great that you’ve contributed as well - although frustrating that you don’t get any feedback on findings. It’s such a simple, non invasive test but I think the real cost is in the high magnification equipment which I’m guessing is the reason many hospitals don’t have one? So I’d like each rheumatologist to at least be able to use a hand held dermascope and decide on this basis whether to put a patient forward to get the proper microscopy testing to be done by AI - and also know how to interpret the findings. It apparently works for diagnosing other related autoimmune diseases too as each affects the capillaries a bit differently with unique patterns.
Mine were entirely normal for the first three done in my hospital over about 4 year period but Prof Denton found scleroderma changes straight away using his hand held dermascope on the spot last year so I didn’t need the more intensive microscopy testing after seeing him. He diagnosed me there and then - just 2 years after my nailfolds had been found entirely normal. I liked seeing the screen on the previous ones but it was a bit frustrating remaining undiagnosed on this basis alone. I realise there’s only one Prof Denton who could do this so quickly and confidently but I think it’s a skill they should train many more general rheumatologists to undertake or at least interpret with help of AI. X
Hi, that's a crying shame that you don't get the results - did they say if you will be on a waiting list for a proper nailfold capillaroscopy with results? It sounds like you should be, what are your current symptoms?
I am not too far from you in Manchester, I had a capilloscopy & hand thermology done in 2022 (2 years after first having health issues), I think it was at Wythenshawe hospital. It seemed a long wait but was months rather than years. I had Raynauds type symptoms brought on by the cold only and puffy fingers/rashes, brittle/warped nails etc. similar in my toes.
Before test I looked up online what to expect from the images, so you can learn yourself what to look out for , e.g tortuous or hemorrhages.
When I saw the images I could tell there were problems, certainly not neat uniform capillary loops.
My Rheumatologist was sent a report that detailed each finger and the severity etc.
He didn't explain any of to me and simply said that my microcirculation was abnormal, and confirmed secondary Raynauds. I was already prescribed Nifedipine, so I stayed on the same dose and nothing else really changed, no treatment etc. I think I had more blood tests after that to check for Systemic Sclerosis (I never heard back about this) and a lung function test + heart scan (both normal)
Generally my hands have been in better condition since, but a few months ago I noticed a few hemorrhaged capillaries at the nailfold that I could see with my naked eye(!) so clearly something is still active.
To answer your question what are your current symptoms.
I have quite a range of symptoms caused by varies condition ,it would be a long list, but my most recent symptoms that seems to be getting worse is in my hands.
At the moment my hands are very painful, swollen and stiff and I wake up in the night with dead hands and have to move them to get the feeling back.
Yes , knowing the results may have been useful, I will ask my Rheumatologist next time I see him if a capillary test is possible.
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