Hi there, I’ve posted a few times about strange symptoms snd blood test results. I’m still not medicated or really been diagnosed with anything. Briefly my results so far: positive ANA antibodies, strongly positive Antiphospholipid antibodies (2 out of three 12 weeks apart), confirmed vasculitis following biopsy.
I’m experiencing horrible dizziness and often getting a strange numbness - always in my right hand. Starts with fingers and then sometimes goes into hands. Very short lived each time. Does anyone know if this is related to APS? Also is vasculitis related to APS at all too?
Thank you in advance for all your support,
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Daisyyellow
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I asked you a couple of questions on your last question but you did not answer. Now I wonder if you did test a Baby-Aspirin as I suggested and if that meant
that your symptoms got better. It is not an anticoagulation drug though and it is possible you need such a drug. That you have to take up with your Specialist.
As I understand you have been in contact with some Doctor(s) who also did a biopsy for vasculitis I think it was. Was this a Specialist of autoimmun illnesses and did he tell you to use Baby-Aspirin when you told him about your numbness?
You also talk of Lupus as you have been on the Lupus site also.
Find a Specialist of autoimmun illnesses who knows Lupus, APS and other autoimmun illnesses as soon as possible.
Also look at the APS Charity website as MaryF suggested on your last question and also read the book I suggested. "Sticky Blood Explained" by kay Thackray is a very good book also good for relatives. We need to learn ourselves as much as we can about our illness as so very few Doctors have knowledge of APS, mostly because it is so rare and difficult to diagnose.
Hi - thank you for reply. I was on baby aspirin for about three weeks and then I developed extensive bruising. I was advised to come off aspirin immediately. The APS charity website is very useful and we are trying to get in contact with a specialist. It’s just the numbness that I was finding disconcerting and wondered if anyone else had experienced this? Hopefully I can get a diagnosis of something soon. Looking less like lupus though now.
It is very important that you get an appointment with a consultant as soon as possible, please put the link to our charity, and all your symptoms and medical history in bullet points, to your GP marked urgent and indicating which specialist would be good for you, it would be best to move this on a bit, so you can get the help you need. MaryF
Short answer: yes, APS can cause numbness. I have posted this description before, so, regulars, feel free to skip. The circulatory system goes everywhere, and so, when our sticky blood issues causes teeny tiny clots, the resulting symptoms will "mask" as an ailment caused by the part of the body impacted and will not appear, at first glance, to be caused by APS. Example: numbness can be the result of a neuro degenerative disease, or the result of micro clots near your nerves. Joint pain can be osteoarthritis, or it can be the result of a micro clot in the bone.
This is is why you need to see a doctor who has experience treating APS. A Google search will guide you to sites where you can discover a specialist near you. APS Is an ailment that can wear many hats. And the doctors will only suspect APS if you exhibit the following symptoms: a DVT a.k.a. deep vein thrombosis; a PE, a.k.a. pulmonary embolism; an ischemic stroke; a heart attack; or multiple pregnancy losses. but my experience from monitoring the site is that most people initially present with other symptoms which are often overlooked for years by "average doctors." And yes one of those oft-mentioned initial symptoms is tingling or numbness in legs feet arms and fingers.
Thank you Gina for your response. That all makes slot of sense. Can I ask if you know if a diagnosis of APS can be made without having a clot? I have two out of three of the Antiphospholipid antibodies and tons of symptoms - virtually every one apart from a major clot. My worry is that without treatment I’m a ticking time bomb for a clot. Many thanks for your time
Thank you - yes I’ve got 2 out of three 12 weeks apart, I’m hopefully speaking to someone tomorrow but with covid things are a bit up in the air with consultants: may have to pay initially for a private consultation.
Hi there I had a telephone appointment today that has left me a bit confused! So apparently I have all three antibodies and the readings are quite high apparently. I’ve not had a clotting event but having migraines, headaches and dizziness as said before. She said unless I have a clot they can’t diagnose with all or treat with anything. She agreed to aspirin after discussion. So I’ve started back on that. Can I just ask if you or anyone knows is that the usual treatment? I feel very anxious that I’m high risk for clotting and there’s no real anti coagulation treatment recommended until I have one! Makes me feel like a ticking time bomb....
thinking about getting a second opinion but wondered what your understanding was.
Again, do try to hook up with a doctor who has experience treating APS. Dr Hughes himself has observed that with some patients he finds that, even before a major clotting event, treatment with a blood thinning medicine will reduce or eliminate those diagnostically confusing minor symptoms. Going private is not ideal, but it may be your best choice.
I have it in different parts of my body, but usually the lips are the first to tingle . My arms can feel like they are separate from my body- or at least a bit weighted wrongly- almost like they’re floating a little bit. They can also feel tingly .
My legs can have similar sensations, but I usually experience it as my feet hit the floor at the wrong time when I step.?
Dr Hughes told me that is was part of the dysautonomia most likely- the thick blood in tiny capillaries does not innervate the nerves ( off the spine) correctly.
As far as vasculitis:
There is a very clear distinction between a true ANCA/ PANCA positive antibody autoimmune vasculitis in its own right ( its own distinct autoimmune disease) and a “ vasculitis” simply meaning an inflammatory response/ swelling of the interior of vessel due to an assault/ attack on the lining of the vessel walls, or as Professor Hughes called it, vessel membranes.
I have vasculitis, but it’s a result of my vessel membranes being attacked by autoantibodies directed against the phospholipids there.
This causes swelling and inflammation. Theses vessels ( can be small capillaries) can close , spasm... sticky blood exacerbates this process.
Blood pools / clots behind this narrowing / swollen irritated “vasculitis” area. The blood can disperse out of that vessel and that’s what you see in the skin rash.
If you look at one of my posts from over a year ago I posted a pic of my leg with it. My dermatologist thought it was a lupus vasculitis. He sent me to my rheumatologist, who consulted with my hematologist.
Together they told me what I’ve just told you.
They simply told me I was already on Rituximab infusions- and stay the course. They increased the frequency.
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