Basically my question is, do the images below look like something that could be related to Sneddons, Antiphospholipid Syndrome or Livedo? Sorry to ask but I'm very confused with my symptoms!
I have recently been diagnosed as having Functional Neurological Disorder yet a member of that community directed me to here as some of my symptoms are rather peculiar and match some of her own yet she was wrongly. I have Raynauds (diagnosis and meds took 10 months) which began as soon as cold weather started In November 2011 which included symptoms of immense pressure in my head and circulatory problems. In late Jan 2012 I became very dizzy and uncoordinated for some day and later collapsed and was taken to hospital and treated for stroke, and thrombolysed (after symptoms were better, vision blurred in and out for a while but an painful purple small lump appeared on my knee and was gone a while later), I felt it clear this 'block' in my neck area and even my parents could even hear the pressure release with my voice in timed increments (right side of the face was swollen also), yet MRI of the brain was clear, later diagnosed as 'functional stroke' and told it was placebo (by a doctor that didn't even work in that hospital and I'd never seen!). I tested positive for APS yet the Dr said it was probably a mistake. I suffered two more severe episodes and taken to hospital, the third symptoms of a heart attack, which is when they let me know I have tachycardia and have done since then. In the summer I tested negative APS yet positive ANA, again, Dr saying it was probably a mistake. I had about 50 attacks of varying degree (majority & severe in cold weather) until starting on Nifedipine in November 2012, since then I've had about 7 medium-severity attacks all taking place during the days we've had more bitterly cold weather. I was more recently diagnosed with FND by a Dr who didn't have any of my medical records, referral records or scans and didn't even want to know about Raynauds. I'm trying to get my head round the diagnosis but there is still a lot that doesn't make sense.
The lovely user on the FND board suggested that I looked into Sneddons, APS and Livedo the latter of which which I had no clue about yet on links to the photos I realised that my skin does do something seemingly similar, I never really thought on it :/ I'm 27 and I have awful circulation, my legs and feet are always freezing (below the knee) and sometimes half my body just goes really really cold and I hate it. Randomly I also get one sided facial flush (right side).
Anyway, thank you so much if you've read this and I really appreciate any help or responses!
x
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Hi there, you certainly do need to look into APS, also known as Hughes Syndrome. Many doctors/consultants have no knoweldge of it, you need to find somebody who does. Some of us with Lupus, like myself also have Hughes Syndrome APS. The right consultant will help you with this. YOu can find help on the NHS or also privately at London Bridge Hospital. I hope you manage to receive some more help. I have a variety of autoimmune diseases and due to his use a variety of forums all in their own right good for each specific disease, hence this one for my lupus. Mary F x
I can't seem to be able to open the picture for some reason, is there another link you can use other than google? Livedo is found in people with raynauds (poor circulation), APS (clotting tendency) or Sneddons (cerebrovascular issues). Most rheumatologists seem to treat Livedo as something benign, though, despite it being linked to serious conditions. It is usually diagnosed through skin biopsy but I'm not sure which is the best specialist to understand livedo, a dermatologist, vascular doctor, neurologist. I'm struggling to find the right specialist myself at the moment. My rheumatologist is unconcerned, so no help there. Let me know what progress you make in the diagnosis, please, it would be very useful to know.
Whoops! I'm so sorry I've fixed the link now Can you let me know if that works? The album (stupidly) was set to provate *sigh*.
Thank you so so much for answering me. I've also had a lot of uninterested doctors including a rhumatologist trying to tell me it's anxiety. Last time I checked I don't really feel it and not sure how it would make my body all different colours and temperatures! I'm amazed at the amount doctors appear to get away with my just passing the buck rather than seeking education. Ho hum! Hugs to you!
I can't really see it properly, I'm having the same difficulty trying to get a picture of mine. If taken in the evening the flash will make the pics too white but my LR usually kicks in in the evening, so that's the only time I can take the pics! We need to find a dermatologist specialised in livedo and lupus generally. I was on a US based forum the other day looking at livedo and one particular doctor came up in NY. His name is dr Andrew Franks and he has 3 specialisations in dermatology, internal medicine and rheumatology and consistently voted one of the top doctors in the US. His credentials are impressive med.nyu.edu/biosketch/franka02 and if I could afford it I would go see him! There must be a similar doctor in the UK, surely! Only a matter of finding him/her.
I can see your pictures it's what I call corned beef skin as I get this.i didn't start out with this but pretty much dominant now.indeed to ask you some questions plz.is it purple in colour and by looks of it you have all time but at 1st did it come and go everytime I have it try get my camera but not quick enough.I noticed your toe nails look discoloured are they and also are your fingernails as mine are purplish/dark.my fingers go red like yours and heat up and are always very sensitive to heat and dryness ie towels/clothes.palms of hand red and white mottled almost constantly.hands never cold but get cold from knees to feet sometimes and discoloured toe nails now and again.can you please let me know if any similarity you x
what u describe with u're nails & sensitivity in u're hands is normal 4 Raynauds (lupus CAN do this at times but wouldn't like 2 say definitely caused by 1 or the other as I have shed loads of overlapping conditions so all mixed in2 1 4 me!). Not EVERY1 gets it but like most autoimmune conditions, we all experience different things.
They don't always go cold, sometimes they just go numb or intense pins & needles, burning sensation etc, it's different with every1 & I guess it depends on what overlapping conditions u have & whether or not it's a 'secondary' condition or 'primary' 1
Forgot to mention have a purple rash on inside thigh, started as spots then joined together to form a circular shape then spreads in size.wish I could take pictures and put on here I'm so thick with computers x
If it's a purple raised 'rash', I'd get it checked as the CBE (Corned Beef Effect lol!) looks more like it's UNDER the skin & not 'raised' like a rash x
hmmm, do u think it could some form of dermatitis related 2 stress? Could even b vasculitis, (inflammation of the blood vessels) which I get from time 2 time, as do a few lupoids. I'll try & find a link 4 pictures 2 post so u can compare x
Have a look at this. Must admit, mine doesn't get as savage as a lot of the pictures here but it gives u a general idea of the rash, but as u can c in the pics, it can vary in severity & appearance quite a bit x
No but if you Google sarcoidosis and then images scroll down to last four pics it's second PIC up on left side.but it doesn't start like that it starts as spots that join together and this is rash I had for nearly 2 years in Spain and what I have now x
If I were u I'd take a photo of it & show it 2 u're Rheumy. What reason did the docs at u're surgery give (if anything!) 4 the rash?
U definitely can't put it down 2 a reaction 2 anything u've eaten, used etc?
U need 2 c a dermy as they would b better in identifying it I would've thought. Go back 2 u're GP & tell them u want 2 b referred 2 dermatology 2 get this rash checked out as u could possible get an appointment with them b4 u're next rheumy appointment. Can't believe u had it 4 2 years without anybody giving u any idea as 2 what it could b x
When I had it for 2 years I lived in Spain and they did a biopsy but my marriage broke up and I left before getting results.the rash I have now I've had for 10 months but it doesn't bother me it's not itchy or sore even tho it looks quite aggressive x
I have APS, SLE, MCT, Raynauds, RA, Sjogrens etc & can confirm that livedo (corned beef skin is what I call it too lets lol!) is quite common with lupus,APS & Raynauds. I'd definitely question u're APS diagnosis, given u're previous history of stroke etc & previous positive test.
Sher, my girl, I'm obsessing about this corned beef skin at the moment. I didn't have it as pronounced before but today is all red and angry. Do you have it all the time? How long have you had it, pls? I'm trying to get a feel for how long before I look like I'm wearing my blood vessels on the outside. Thank you, as usual. Xx
It's always there, but varies in how noticeable it is. Because it's all linked 2 u're circulation, I find it's worse if I'm still & in the colder months. If I'm laying in the bath I sometimes look positively purple sometimes lol! I think the water makes it look it's worst. It's worse on my legs & not as noticeable on my arms & hardly visible at all in the summer if I manage 2 get a tan (although with our weather, it's not always a given!).
I have had mine ever since I can remember in all honesty, even when I was really little I had it but obviously everybody just thought I was a very pale & pasty child :/ x
Thank you, I'm just getting my head around the fact that i'll now have it continuously. I had an episode last night where it got really visible, with red patches on my knees and top of my arms. My feet got really cold, so I went and had a bath and, as you said, everything looked even worse. Plus pins and needles in my feet. But when I got out and was all warm, it went away. I'm now thinking I might have Raynauds, it's the first time the circulation has become an issue. Yet another thing to worry about, I'm fed up, how much more to pile on, I thought I'm having it all under control but now this.
You mentioned tan - I've become so paranoid with the sun, everywhere you look it tells us to not be in the sun without lotion. I take it it doesn't make you ill?
I used 2 get really bad sunstroke b4 I was diagnosed & 4 about the first few years of diagnosis, I used 2 rash up in the sun, had 2 keep covered up & in a shaded area & could only manage about half an hour b4 I felt dodgy which was awful if we'd taken the kids 2 the beach as we could never stay very long because of me.
Now I don't have an issue with the sun (some of the meds can increase a reaction from the sun too so always good 2 make sure u're aware of potential side effects).
I even had my first 'sun' holiday in Tenerife last June & felt absolutely fantastic over there because of the heat, No raynauds, no joint pain, tendons, muscles etc all seemed 2 behave, it was fantastic! Even managed 2 get a lovely glowing tan! Obviously I wore sunscreen & kept reapplying every 30 minutes or so & made sure I stayed very hydrated.
I DID have UV light therapy a few years back 2 try & clear up a rash & makes me wonder whether this could've had anything 2 do with the fact I no longer seem 2 b sun sensitive, or whether it's just a case of my lupus is manifesting in different ways now as I was in the middle of flare when we went 2 Tenerife so I was very surprised that I was ok as I was all prepared 2 b in the shade & covered up.
Not every1 is sun sensitive & I think the only way 2 find out is 2 try it in small doses (obviously still use sun cream) & c how u go but in all honesty, even though I know that at the moment, I seem 2 b fine, it could very well change & I wouldn't push my luck & overdo it
Hi everyone, i was diagnoised in Nov 2011 with DLE also LET, im still trying to understand this illness at the mo' the doctors dont tell you anything, I have also suffer from IBS and since october last year i have been suffering with a constant cold and my ears are also very waxy my eyes always watering and my hand and feet are always cold i think i could also have reynards syndrome as my fingers go white and red and can get very sore especially when its really cold. I have also had sebacious cyst on my face in my discoid leasions the doctor gave me antibiotics but it hasnt cleared them so he gave me a stronger antibiotic and fucidin cream the cyst are still on my face avnt bothered going back to doctor as i dont think they know what they are doing. We only ever have a locum doctor as none of them seem to stay for long so im just going to wait till i see my dermy in march. Does anyone else suffer with cyst as i read about the singer seal, He had Dle as a child and got cyst. I asked my doctor could it be my lupus and he said no? Any advice would be great as im still trying to understand this stupid disease Thanks!
I tend 2 get very small cysts popping up (thankfully only on my body, so far not my face) but I don't have DLE, I have SLE. It's only happened in the last couple of years (I was diagnosed with lupus 19 years ago) & I queried it with my rheumy who seems 2 believe it's another 1 of those things that lupus can cause.
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Can you let me know if that works? The album (stupidly) was set to provate *sigh*. 
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