been researching Livedo Reticularis again because I've had it all my life and it is driving me mad now (think it might be getting worse and my feet are now going more and more purple when they weren't that bad before) I'm determined to get to the bottom of why I have it. I'm a 32 year old woman and I've never been diagnosed with anything but was convinced that I probably had APS. Recently I have also developed Raynauds-like the last year or so, not very often but occasionally I notice my little toe will go white, or half my fingers will tingle and go white. So I just researched that in association with Livedo and found out about Sneddons (I think maybe I came across it before but dismissed it for some reason).
Anyway it has got me quite worried now, does anyone know much about it? I searched some posts on here but they were all quite old ones. I know it's rare, I'm unsure if I have APS and/or Sneddons. Neurologically-I've been severely depressed all my life and noticed lately that my memory might be slightly worse but I can't be sure. I also sleep a great deal. Worried as I'm coming up to the age where I could start seriously being affected if I do have this. It's associated with APS right? Does anyone know much about Sneddons? Thanks!
I can see you are worried & the worst thing to do is to use the internet to diagnose. It’s like medical students who think they have every illness they study.
I am not making light of your worries but you say you suffer from depression and therefore what you are doing is making the situation worse.
In its self, levido is benign. During this coronavirus crisis, many people have become understandably anxious and depressed.
Have you thought about contacting online or phone services to talk about your worries? If you have access to your doctor, contact them.
Please stop your research because this isn’t helping you!
Your worry and depression is genuine, I can read that, but using the internet can be so dangerous.
You posted similar about Hughes - how did you get on with seeing your GP about that?
So many things can relate to Livedo Reticularis or Raynards, did you get your bloods checked for thyroid, feriten and B12?
At this time with the virus, unfortunately GPs are extremely busy, so I suggest you keep a note of all your symptoms, stay off the internet. Once the GPs are clear, you can go and talk about tests.
What do you find relaxing and mindful to help your anxieties and depression? Do you have anyone you can talk to?
If you find this totally overwhelming then yes please call your GP.
Hi, if you or your relatives, past or present have any autoimmune disease, (including Thyroid disease), ahistory of migraines, miscarriages, heart attacks of strokes at an early age, then it would be worth getting tested, there are three tests, but you would need to visit your GP or phone up, or email them with your wish to be tested, however it may take a while to get testing done, due to what is going on. If any of the things I have mentioned ring a bell, then it would be good to write down your medical history in bullet points and any history you have, to support your reason for testing. If you have no symptoms, then maybe it is just one of those things. However if it looks likely, it is important that you have a referral, after this current crisis to of our recommended specialists. An untreated Thyroid condition and other deficiencies can cause depression, either way you need some support to talk through your anxieties. I hope you feel better soon. MaryF
You would need to see a neurologist for sneddons. My understanding is there’s a specific genetic marker for sneddons syndrome.
You would need an MRI as well.
Many patients with sneddons also have APS antibodies, but I am unclear if they all do, and I’m also unclear if it’s a requirement for diagnosis if sneddons syndrome.
There is also “cerebral APS” which I thought the same as Sneddons, but have since been informed that without a specific genetic marker for Sneddons, it is not the same thing.
Only Sneddons is Sneddons .
So you must see a neurologist who has experience in APS and sneddons to test you for both ( as it sounds like you need it to feel better ).
You did post several months ago- if say if you can’t get to a doctor safely, and you have concerns about livedo, you might call your GP and ask about taking an enteric coated aspirin - or perhaps something else your GP recommends instead- every others day and see if it clears up.
Sneddons syndrome other name cerebral APS, memory severely affected
Depression can also cause memory problems as does anxiety, hope you feel better soon, I have cerebral Aps my symptoms are different to yours hope you feel better soon
If you would like to learn a little more about APS can I suggest a book called Sticky Blood by Kay Thackray available on Amazon. It does cover livado. I don't think it covers Sneddons though. My symptoms started in my thirties and I don't test positive for APS but have been diagnosed with it. The book covers a lot of different symptoms and also covers things to look out for in the family. I was much better informed and less worried after reading it.
Take care
Kaz xx
Hi Kaz, thanks for that book recommendation I will check it out might be very interesting.
I can only speak from my own experience here. Not being believed by Doctors can cause extreme anxiety as I know to my own cost. What I would say to you is that you know your body better than anyone else. I'm not in any way advocating self diagnosis. However, I would recommend that you take photos of your Livedo Reticularis and note down any other symptoms that you notice when it is at its worst. And any other symptoms that may be troubling you. Armed with that information I would then change my GP to one that does things differently and is prepared to listen and investigate your health problems with you.
Something that I learnt was that I had to take charge of my health issues and that it was up to me to resolve them.
I was described by a Neurologist as having a bizarre spastic type walk. He went on to diagnose me with psychological and not physical problems and left me without a treatment plan. After I changed Neurologists, to one who had the decency to listen and investigate properly, to cut a long story short, he went on to diagnose me as having had an area of my brain damaged by a stroke, hence the way I was walking. I was also diagnosed with two areas on the spinal cord that had been damaged by ischemic attacks.
That's what I mean about believing in yourself. You do know your body better than anyone else. Listen to what it is telling you. I am not saying it will be an easy journey for you. My advice would be to change Doctors and take it from there.
I am very sorry that you haven't had the opportunity to talk and have your problems thoroughly investigated. Being believed is half the fight. Take care.
Hi yeh it's weird, some people see my skin and are shocked by it, others think it's normal. I remember my friend commenting on my legs when I was a kid. I also mentioned to the docs my fatigue and sleeping a lot and because I'm vegetarian she was more bothered about my iron levels which is mainly why she gave me a test. I really wish I could find out what was abnormal about my blood test-it was obviously something fairly rare or she would have known what it was...I keep meaning to take photos of my skin, I think I'm scared of seeing how bad they look on photos though
Wow I'm sorry you had all those problems with your health and not diagnosed properly, that is awful. I'm glad you got a good neurologist in the end. There are some really good docs out there and then others just patronising dismissive ones. I know there's something up with me, it might not be APS or Sneddons, it might not even have anything to do with how my skin is but I certainly feel different to the norm I just can't figure out why. Thank you for the advice.
I have had Liveido rash beginning in my in my twenties. And I had a few severe bouts of dizziness and temporary blindness also in my twenties. These became so alarming that I began keeping a log because I was otherwise completely healthy, exercising etc. At thirty, I had a stroke affecting my peripheral vision.
Like you, I did a deep dive into research. One neurologist said a syndrome is not a diagnosis; it is just a series of symptoms, and that there is nothing to do.
Another had done lots of research on migrane which actually brought her to some knowledge of Sneddon's. I went to see her. She put me on 1mg folic acid and a 80mg asprin. I have had no symptoms (except the livedo) for 11 years. She is retired, but it was Dr. Gretchen Teigen at the University of Toledo in Ohio.
Hi, welcome to our forum, you have answered a very old post and many may not be here anymore. I'm going to turn off this post but please feel free to answer current posts or post your own questions.
Again welcome, looking forward to having more discussions with you.
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