I have suspected APS as I have had high Igg Cardiolipin for 12 months now, 2 previous miscarriages.
I am having severe balance issues. I’m off balance every time I walk, my movements are also affected. For instance, washing my hands makes my head go funny - best way to describe it is my brain feels heavy and like a dropping sensation. I hung my towel on the towel rail and my head went funny. It makes the affected limb feel funny too like my arm.
When I’m walking, as well as the off balance I keep getting that heavy brain feeling suddenly and my left leg as I walk suddenly feels heavy, stiff and like I’m going to have to drag it (I don’t but it feels almost like it’s moving in slow motion) it’s a very frightening experience everyday and I’m really suffering. This has all been getting progressively worse for the past 12 months but especially since December. I’ve had a clear brain MRI without contrast. Clear EMG/NCS.
I take 150mg Asprin daily & recently 2.5 weeks ago started on Hydroxychloroqine.
Does anyone else suffer this bad? Is there any hope of ever getting better? I feel at a complete loss and helpless.
Thanks I’m advance xx
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Crose86
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I read your initial first post regarding the slight back and forth between The hematologists at Guys and St T’s last month.
My understanding is it did land on APS with no clotting history, therefore aspirin. ( I’m confused because miscarriage does count as clotting history.)
This would have preceded your vaccine.
No one knows if you were antibody positive antibody pre vaccine unless you’ve been drawn for them in the past? I’m unclear when your initial diagnosis was.
For all of us here, the vaccine can cause our APS to flare. Any illness can. My rheumatologist told me to prepare for it - post vaccine take a bit of Benadryl. It could be the vaccine just sent you into your first “ flare.”
Ask your rheumatologist- he or she will likely be the best to help you with answers to these questions.
Noteworthy comments:
1. You sound so very typically APS, with quite a lot of typical neurological involvement- when thick or sticky blood is affecting your brain. ( you could be describing me.) I suspect you can feel faint or a bit disassociated from yourself when this happens? Maybe a little sick?
- you might benefit from EEG- rule out temporal lobe epilepsy - not terribly unheard of with APS.
- POTS: are you getting intermittent white blanching circles ( s small spots with no color) on legs if standing still for a little bit bit, or after a hot bath or shower? The blood doesn’t quite circulate/ pump it all back up with perfect efficiency? Might be on back of upper arms, shoulders? ( just trying to figure out your “funny turns” ) … more and more APS cases are linked with POTS.
Basic general info just in case you have not seen it.
Recently seen a different consultant after St Thomas’s fobbed me off as I’ve never clotted or not had 3 miscarriages. If I had APS previous to vaccine I didn’t know about it. But I Do now. I’mNot looking for a diagnosis on here or if I had it before V or not I guess we’ll never know I’m just really struggling with balance issues and every move I make and I’m wondering if this is normal & if anyone has been in a similar position to me and has gotten better.
I had pots anyway pre V but was well controlled with Ivabradine and exercise. Never experienced anything like I am now and when I first got diagnosed with pots it was severe.
What is me please?
My circulation is so bad my feet go purple and recently started getting chill Blains 😔 x
Hi Kelly, I too have terrible neurological symptoms as you described. I'm glad you mentioned this happens when bloods too sticky, as I've never correlated my neurological symptoms to wether my blood is too thick or too thin. Now I know these symptoms happen when blood is too thick, and will be sure to eat and drink things that will thin the blood.
1. Don’t let feet get moist especially cool , damp moist . Wear all natural fibers for socks and shoes. I wear “smart wool” and only leather or wool shoes. I make sure in summer if I wear sandals, that souls are suede.
2. Try not to put you r warm feet on ice cold floors - then warm too quickly with heat. Warm slowly. ( don’t put in front of hot fire full on… when icy cold.)
For chilblains with unbroken skin, try a product that brings tingling warmth / blood to the skin- that has the smell of friars balsam and/ or Ben gay muscle rub for sore muscles after athletic work outs.
I think the UK has balmex (?) but I’m not sure if it helps. ( not sure if any of the over the counter products really help.)
Thank you. I do tend to use a water bottle when my feet are cold . I always have done and never had problems previously but these past few weeks I’ve started getting chilblains. Oh the joys lol xx
Have they now tested you for all the three antibodies they test? What about the Lupus Anticoagulant? Was that one negative and also the anti-Beta2-Glycoprotein 1?
Did you read "Sticky Blood Explained" by Kay Thackray I told you about? She also had neurological symptoms like me.
Did you notice some improvement after starting Aspirin or not?
You said you saw prof Hunt also. She knows APS.
Many APS-sufferers have micro-embolies that are very difficult to find on a Scan. I am one of those people. But today most APS-Specialists know that they exist and give us these awful symptoms. This is a difficult illness and we have to fight hard to get to the right Specialist and get the correct bloodthinning-drug.
Stay with us here. Let us know how it goes for you
I haven’t read the book as yet, too nervous of what I might see to be honest 🙈
After speaking to a member of Bev Hunts team they decided despite my symptoms Asprin was enough. Luckily a lovely lady who I found on here mentioned Dr Kaul and I had my first appointment with him a few weeks ago. He was brilliant and started me on Hydroxychloroquine to start with and see how I go. Almost 3 weeks since I started this. He mentioned possibly adding clopidogrel when I see him in 3 months if needed. He also mentioned I needed all 3 bloods you mentioned above and is requesting my Drs to do this (as I paid private for the appointment but can’t afford to pay private for my bloods). I’ve not noticed any improvement other than headache improvement on Asprin, but my headaches were never really bad anyway.
Thank you for reaching out again, everyone’s support is much appreciated xx
I have read on thous site -years ago--that sone of the body's smallest capillaries where easily clots can easily form, are in the middle and inner ear, which is where balance information is processed. This would not explain your funny arm and leg issues, but.,,.,, Perhaps you need a more powerful blood thinner?
Hi,Yes this is what I’m thinking. I’ve not long ago been started on Hydroxychloroquine and then my specialist mentioned if no better in 3 months putting me on Clopidogrel. This is a long hard road isn’t it xx
I’m thinking possibly clotting to tiny capillaries to inner / middle ears also. Thinning the blood or getting the anti platelet right or a combo might be the right way to go.
I still think there is something to ( in SOME patients) clexane or even apixiban at a little lower dose if no visible clotting or and history of clotting - then adding clopidogrel at 75 - less likely to bleed with LMWH than warfarin when adding anti platelet clopidogrel rather that aspirin.
( per my hematologists.)
This is not suitable for all patients. ( sadly I am not one of them. )
This is a perfect example of why APS specialists are so vital especially when it comes to hematology.
Interesting, so can clotting in tiny capillaries last 12+ months? I am still so new to all of this. Is there a way of diagnosing this if it is the case? Xx
1. No two patients are ever alike. ( therefore we need differeing INR if we are candidates for warfarin.) APS is spectrum of severity. Gold standard thus far is normally warfarin for traditional diagnosis -
2. Microclotting is understood by specialists- can normally not be picked up on most scans but evidence of damage can be seen in symptoms, if knowledgeable specialists have ruled out other problems.
Bottom line- this is why is keep telling you to please ask your rheumatologist.
I have been asking my rheumatologist for the last 12 months. Hence why I’m here looking to see if anyone is in the same position or have been who may be able to shed some light or help point me in the right direction.
Do you remember that I told you your symptoms sounded like POTS?
This is why it’s important to see APS specialists. Only one of many reasons. We can’t know your medical history. I had to gleen this .
MAST cell- another mast cell ( mediator) degranulates and releases heparin. It could look a bit like little patches of vasculitis on skin. ( to answer on of your previous questions.)
I was under the impression you had a very thorough APS specialist rheumatologist now?
I already mentioned I was already diagnosed with POTS prior to all of this pre vaccine and never once felt like this. Totally different. I have just recently found a good rheumatologist since speaking to a helpful lady on this forum who started me recently on Hydroxychloroquine. My post was purely to see if others had suffered the balance issues as severe as me and if there’s any hope. That is all
I experience microclotting in my inner ears. My first known episode was in 1983. I was 25. The ENT said he knew what was wrong but there was no testing for it. He prescribed an injectable blood thinner 2x a day for 30 days and 1 prednisone daily for 30 days. I did regain some hearing at the time. I began to suffer from vertigo at 30 years old. Another ENT prescribe Dyazide( blood pressure medication). I’m still taking it. It helps balance fluids in the ear. If I forget a dose I know within a few hours that I forgot because I get the heavy head feeling and dizziness. In 2014 I was diagnosed with APS. Finally. I’m sure I had it in 1983. I have loss much of my hearing but it is corrected with hearing aids. I got my 1st pair 30 years ago.
I hope you are able to find the correct medication to help prevent your symptoms. I believe you will need to be your best advocate to get proper testing and proper care. It’s very important for your health now and in the future.
I forgot to add there is no imaging for microclotting in the ear but has been reported and researched. There are no test for Meinere’s Disease except some kind of incredibly painful test. My ENT prescribes the blood pressure medication and if it works then he makes the diagnosis.
Its a long road until you find the med that is a good fit for you. I have been on warfarin since 2001 and its as if that med just pushed the "off" button on many of my symptoms. Since going gluten free in 2004 I have had no symptoms with an INR as low as 1.7. We still know so little about the biomechanics of our illness. Oddly enough, the relationship of APS with Covid is shinning some light.
I had DVTs in my legs shortly after the birth of my 2nd child in 1986. ( We were lucky as she had placenta previa, She was born in only 2 pushes so having the placenta rupture too soon was not an issue.) Starting in 1999 I began to have migraines. My ophthalmologist didn't like the way my retinal capillaries looked and he suspected APS and ordered a cardiolipin antibody test. ( My LA test had been positive since childhood.) The CA test results were " lost" by my GP, to whose office the eye doc had sent the results.
Those migraines began to morph into what I called panic attacks. My doctors managed to convince me that I was making up symptoms, so panic attack is how I described these events. Then, one day I had my worst panic attack. Only this time my teen aged daughter saw me and realized the facial drooping, slurred speech and one side paralysis was a bit more than a panic attack. But local docs continued to write off my symptoms, even though I began having more of these mini strokes. Finally, that rogue eye doc heard of my problems. He referred me to a neurologist, who ordered MRIs, which confirmed I had had many mini strokes, then referred me to an out of state hematologist who had experience treating APS and prescribed warfarin. End of symptoms.
I will add that dizziness often accompanied those panic attacks. Even as a child, I was proud of my tendency to not bleed much when I ... say.... scraped my knee in a fall. This was proof to me that I was " tougher" then my playmates. Now, if I cut my finger or scrape something I actually have to use a band aid.
In my teen years I had 7 debilitating cases of " mono" within 14 years. My LA tests were always positive, but lupus was never confirmed. My last case of " mono" was cured with a dose of steroids by a doc who knew: 1had lupus ; 2 my physician father also had had lupus but; 3, my mother thought my father was making up those symptoms because lupus was a hypochondriac condition; and 4, this was the major reason my parents divorced.
Since going on warfarin in 2001 and then gluten free in 2004 I have been -even up to today in my mid 60s -- healthier and more energetic than I was in my teens and 20s.
In defense of my Mother, I will add that Father went to med school on the post World War 2 GI Bill education grant for veterans. Except the grant was for 4 years and Dad was drafted into the army when he was only halfway through undergraduate college. So ... how to get through 6 years of school in 4 years? Well... sometimes the student was 6foot 6 inches tall with short blonde hair male, and in some classes the student was a 5 foot 2 inch female. And Mom attended a class in 1947 when, in the US, lupus was still defined as a "hypochondriac disease." And, yes, my father's positive LA test made Mom suspicious.
I got the records from the hospital and also showed my Rheumatologist then.They tested for some snake venom those days. Lupus. He died from neurological symptoms but also leg spasms or something like that. I told my mother about this but my grandmother was already dead. This was in 2002. I am so glad I could tell my mother. The Rheumatologist said that he was not alone with that diagnose those days around 1938. This was one of the things that made me so interested in this illness as I understood that it may run in families also. My mothers brother had severe migraine etc etc.
I think like the others that you may have like I had microembolies in the inner ear. Today Specialists know that they excist with APS and are difficult to find on Scans.
Probably you need more than antiplateletdrugs for this. I think you should read the book. Kay Thackray also had some neurological symptoms and needed Warfarin.
The only way to tell is to try different sorts of anticoagulation to see if you will feel better. You need as much information you can get about APS together with a Specialist.
dr Kaul is doing the right thing I think. Stick to him.
Prof Hughes who really knows this illness, sometimes started the patient on a low dose of Low Weight Heparin (that is not an antiplatelet-drug but an anticoagulating- drug) and if the patient was better after a couple of weeks he then could start the patient on Warfarin. We all are different with different symptoms with this illness but sometimes some symptoms (especially neurolgical) tend to need the same drug.
Tell us if you get the answers on the Lupus Anticoagulant (LA) and Beta-2-Glycoprotein 1. Important to get those bloods done.
Low Molecular Weight Heparin (LMWH) it should be like Kelly also said. Sorry. My Hematologist in Sweden gives me Warfarin since 2012 but I test exstremely often at home and know how to control my INR which is very important. Still I need a high INR to be without clots etc.
Just jumping in here because I experienced so much of this with undiagnosed, untreated APS. Neurological symptoms, balance issues, stuttering and a micro embolism in my inner ear which requires me to use a hearing aid. Appropriate diagnosis and treatment is essential but also can be hard to get to. Advocate for yourself. Push for answers.
Thank you for your input, it’s all appreciated. How was the micro embolism diagnosed? Have your neurological symptoms improved now on treatment? & what treatment are you on if you don’t mind me asking? Xx
That's exactly what I experienced in the beginning of my long diagnosis of APS. I was lucky to have found a neurologist who really listened and took time to figure it out. It's been over 25 years since my diagnosis and I still have those moments but realize what it is now. It is a clear indication that my INR is too low. I don't do well on Coumadin and use daily 2x a day heparin injections. I also take Plaquinal. It took me a while to get it so I am not unstable daily and no more inr monitoring daily/weekly. But at certain times it still affects my balance and dizzy feelings. Not sure where you are with a full diagnosis but I think it sounds like you need better coagulation? Have you ever been on anything more than asprin? The Plaquinil definitely made a world of difference for me. Maybe finding a better solution to control your INR would make you feel better?
Thank you for your reply. No I have not been offered stronger blood thinners as yet just Asprin and 4 weeks ago started Hydroxychloroqine. Not feeling any better as yet. My consultant mentioned in 3 months if no better possibly starting me on Clopidogrel. The off balance and woozy feeling is so intense. Really praying it’s something we can get under control as I feel so poorly everyday 😟 I’m 35 now and really want to have a kid asap but need to feel better first (I wouldn’t even be able to look after a child at the moment let alone carry one). Praying for healing everyday 😔 xx
I know, it really does make me think that you need to be on a better blood thinners. The Plaquinel does have a mild blood thinning effect but you need to start something more. Yes the plaquinel will definitely help with the achiness but for me it's about the INR. No doubt that it will help but I really hope that you are able to get your Dr. To try you on lo molecular heparin to see if it makes a difference. I'm on the lo molecular heparin, which is way easier than Coumadin bc after 12 hrs you blood goes back down, thus the 2x shot evert 12 hrs. Plus I'm triple positive and have had issues with stabilizing my INR. It takes time to get it right but it is definitely a learning experience to be able to get it right! I wish you all the luck and let me know how you are doing 😊
Have you had your hearing tested? Or have seen an ENT for balance issues. There is medical research on APS linked to micro embolism in the inner ear which causes balance issues and hearing loss. Since my hearing loss began with sudden hearing loss episodes over 40 years my latest hematologist believes this should be listed as a symptom of APS. It’s not common but he thinks it’s a neurological symptom so should be treated seriously. I hope you find answers and treatment soon.
I haven’t yet I have been referred but waiting lists are 104 weeks 🤦🏼♀️ I don’t have any hearing loss. My balance & vertigo is so bad. I tried to go out yesterday & struggled so much. It’s really hard to function.
Hi all! Sorry to jump into the middle of this thread, but it sounds very similar to something I am dealing with right now and not getting any answer. Has had what feels like electricity pulsing in your brain during any of the dizzy or vertigo spells?
I was recently in the hospital for extreme vertigo, partial facial paralysis, tingling on my left side, intermittent tingling/electric sensation in my brain (with bright momentary flashes of light) & blurred vision.
The brain zaps feel like licking a 9v battery or just a slight sensation of pressure pressure, but it comes in a weird wave sensation. It is not at all painful, but is very unsettling. T
he doctors ran MRI & CT and found nothing so they ruled it positional vertigo. I get so frustrated when doctors can't figure out the cause of a symptom they just set it aside and dismiss it. One doctor told me, well that doesn't really fit.
It has been about 2 months. I am still having vertigo & tinnitus, though not as bad. ENT didn't even look at the MRI he just said well if it was clear then it must be BPV.
I have had 1 positive ANA, but not 2 tho I am suspected of having Lupus but unconfirmed.
I had 1 positive test for APS (sorry I don't know which one) and had severe pre-eclampsia, HELLP syndrome & IUGR (growth restricted) pregnancy. They suspected APS, but not officially diagnosed there either. But reading everyone's posts certainly resonates, so I can't speak as specifically as everyone else since I am not being treated for APS, but thought someone else may have had similar experiences as me with these brain zaps?
I am mostly curious about these because 4 doctors have written them off now and act like I am crazy, but I know it isn't nothing and I think it plays a role in understanding this isn't just BPV.
You must have a Specialist who understands this tricky illness. That is very important. I have Specialists at The Karolinska Hospital in Solna, Sweden.
I have had (among other symptoms) microembolies in my inner ear 20 years ago and today I still go to Karolinska to do special tests. They have never found the embolies but I saw a Specialist (Audiovestibular Physician Professor) who said it were most probably microembolies and that I should start Warfarin at once. That has been my lifesaver. (10 years ago)
I still have Tinnitus and wear hearing aids today. The hearing aids can also be from my father and mother who had hearing problems but I had also terrible Balance issues and say double etc.
I have some weeks ago done an AV-test (Audio-Visual test).
I want to show you something written by the former Administrator Dave 6 years ago, who had the same ear-symptoms like me. He wrote this to another woman who had ear-problems from her APS.
"Ear problems are common in APS. I saw, at Prof Hughes´recommendation, Peter Savundra at The Portland Hospital in London. Peter is a Consultant Audiovestibular Physician. A lovely man, he has a good knowledge of APS- related ear problems. "
Dave was called "Manofmendip" as an Administrator. I do not know when he saw Peter Savundra. Could have been several year ago. But I write this to you so you will continue to look for help and know that ear-problems are very common in APS.
We have too thick blood and that gives us embolies and clots etc and a lot of neurological symptoms.
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