Anyone have non epileptic seizures caused by aps?

[Charts]

Just wondering if anyone has non epileptic seizures with aps? I've been having seizures for 2 yrs and diagnosed with fnd. Only recently from having a lupus test (which was negative) did one of the test for aps come up positive so waiting to be re tested in 12 weeks. Im starting to think all my neurological problems has been this all along as I was never convinced with fnd. I also have pots syndrome

[GillyA]

I’ve had occasional seizures since around age 30. These have been diagnosed as epileptic. They were unable to find a cause. However, after APS diagnosis, my neurologist thinks this could be at the root of my seizures, especially as my clot is in my brain, and when they look at scans from 15 years ago in the knowledge of the clot they can see early signs of something.

So can’t help on non epileptic seizures, but good to have a neurologist on side with APS as a cause of neurological problems.

[Charts in reply to GillyA]

I've seen a neurologist and she sent me packing with fnd. She didn't even pick up on pots syndrome it was my gp and I'd been in hospital for 9 days

[Tkt3699 in reply to Charts]

Oh I've had crappy luck with hematology my rheumatologist however is GREAT!

[Lure2]

Hi Charts,

Have you now got a diagnose of APS? So did you test positive to the three antibodies we test twice with 12 weeks between the bloods taken?

If you have got a diagnose please stay with us here as it is a rare and tricky illness that shows up in a lot of different forms. We all have too thick blood here that we must have thinned. Only a Specialist of autoimmun illnesses knows and can help. First of all have the three antibodies taken if you have not had it done. But you talk of APS so I guess you have got a diagnose. I live in Sweden but it is the same illness all over the world. Do not know where you live.

[Lure2 in reply to Lure2]

I see you have tested once and waiting for the second test. I also had a Neurologist first. Some of them do not understand that it is our blood that is too thick and that is the problem.

[Charts in reply to Lure2]

I'm in the UK

[Charts in reply to Lure2]

No I tested positive twice for anti b2 glycoprotein iGg but they did it 1 week apart so now waiting 12 weeks. But tested negative for for anti b2 glycoprotein Igm. From what I read online it's says if you test positive for one or the other twice and spaced out with by 12 weeks is that right?

[Lure2 in reply to Charts]

They test 3 antibodies for a diagnose of APS. 1)Lupus Anticoagulant (that is not a test for the illness Lupus), 2)anti-Cardiolipin, 3) anti-Beta-2-Glycoprotein 1. If you are positive to one of those three taken twice with 12 weeks between the bloodtests taken in the vein, you may have the diagnose but it should also be some other symptoms typical for APS like a clot or something.

[Charts in reply to Lure2]

I've definitely got a lot of neurological symptoms and I know you get this with aps. In the past I've had 2 early miscarriages (not sure if that would apply). Thank you for the information as I'm confused by it all!

[Tkt3699 in reply to Charts]

Those losses SHOULD count as clotting event. If/when you decide to try again baby aspirin, lovenox, hydroxychloroquine are some of the meds you can take. Again sorry for losses, I had 2 also one at 6 weeks & second at 5.5 months.... they thought they caught my diagnosis in time...3rd time I had my 🌈 baby.

[Charts in reply to Lure2]

I originally was getting tested for lupus, but I know standard procedure is they test for aps. The lupus was negative but the b2 glycoprotein igm came back high.

[Lure2 in reply to Charts]

I wonder if you were tested for Lupus Anticoagulant but that is a test for APS.

[Charts in reply to Lure2]

Yeah I'm wondering that 🤔 do they usually test lupus anticoagulant with a lupus test?

[Lure2 in reply to Charts]

I do not know about SLE only APS. But probably they test LA for Lupus/SLE also. Must be very difficult to diagnose SLE or APS as they have so much in common.

[RoseFlowerDew]

Hi,

I’m not sure if this will help but I was first diagnosed with ‘sticky blood’ 4 years ago and my diagnosis was overturned simply by moving from north to south….yet I suspect my antibodies would still be positive once vitamin d deficiency is better.

I started having some kind of fit a couple of years ago and went to see a neurologist privately and came out with FND diagnosis. Reading the materials for FND it was clearly not an appropriate diagnosis as I am treated for pernicious anaemia with hydroxycobalmin. Because of ignorance about pernicious anaemia by healthcare staff, a large number of people in the patient community self administer and so I started to and sure enough giving myself doses recommended for neurological symptoms of every other day has greatly improved things. But sadly not the fitting so I wonder if there is something else going on.

I think it’s unhelpful for medical staff to pluck functional diagnosis out of thin air and so closing the path to discovering (possibly) treatable underlying causes. Education in medicine in my opinion seems to be worsening….not least in ethics. On days when I get angry with what happened to me (left on the A&E floor with undiagnosed subacute spinal cord degeneration and given tranquillisers that had active components which deteriorated my underlying condition faster) I feel like reporting matters to GMC registrars. But most days I am trying to self educate as much as possible. I’m increasingly hearing about people travelling to Europe for diagnosis by better educated staff ….. I may have to pluck up courage for that because a decade on from initial symptoms I am still not receiving correct treatment.

So look after yourself….you are allowed to stand behind yourself if things don’t feel right. After all you bear the physical consequences and not doctors.

[Charts in reply to RoseFlowerDew]

Yeah I will keep fighting because I was never convinced with fnd. I tested positive for b2 glycoprotein iGg (waiting for another 12 weeks) but negative for the b2 glycoprotein igm. But from what I've read its says either one or the other if tested positive twice is a diagnosis of aps? I don't know and my doctor didn't have a clue.

[Lure2 in reply to Charts]

Yes that is correct. First I only tested the IgG and was positive (also positive to the two others but that is not important because you can have the diagnose with only one antibody positive twice.Later on they also tested me for IgM and those also positive.

Today they test me for both and very high titres on them all the time.

Some people get negative for some time and perhaps later on positive again, but if you have got positive bloods once and got a diagnose you will always have APS.

My advice to you: get a good Specialist of autoimmun illnesses who works with those illnesses like APS, SLE, Sjögrens, RA and hypotyroidea as they very often go hand in hand and therefor we need a Specialist who if knowledable and can distinguish between them all. Otherwise we never get a proper diagnose and correct drug to make us feel much better.

[Tkt3699 in reply to RoseFlowerDew]

I totally agree with fighting for yourself! I fired 2 hematologist. Rheumatologist & neurologist have been great at helping me. IF I'd had stayed on warfarin, I wouldn't have had the strokes, TIA'S & Kidney damage as bad as i do now. I have so many different arthritis(s) ah stage 4 renal failure.... connective tissue disorder too! I get this is tricky to dx, but at least LISTEN to the patient!

[RoseFlowerDew in reply to Tkt3699]

Yes! Definitely. They don’t listen and they don’t follow guidelines and don’t educate themselves when given medical educational summaries. I have had to hire a patient advocate to help me fight for correct treatment for pernicious anaemia but sadly she can’t help on the APS, Lupus and ANCA vasculitis front.

My real issue is that I had the antibodies come back positive twice over a six month period and was having a lot of symptoms. I was going to start treatment but because I moved the next two rheumatologists wouldn’t confirm it….not least because I started experiencing vitamin d deficiency so bad it affected my bones and my immunity so all my antibodies for the various rheumatological markers appeared to be non-existent! The doctors didn’t bother to think of that and so I left without assistance. I was told I have to wait for a major embolism before they will give me a diagnosis which I personally find horrific. So I now have had 4+ years of constant chest pain (not lung embolism), memory issues, fitting, and have to treat myself with aspirin and other herbal analogues to get on with life and stop using NHS resources.

[Charts in reply to RoseFlowerDew]

That's awful you have had to fight like that and still no where. Its clear cut you shouldn't have to take your own medication they need to be the ones guiding you. Like you said its like they're waiting for something to happen in order to help you. If this comes back positive now they better help me. Im in the UK so yeah nhs is my help! I'm under ent for the rest of my life (they probably can't help) and also seeing a doctors for pots syndrome (he might be able to help). Problem is most are clueless. When my first results came back positive the doctor wrote not worried as her symptoms don't match this condition as I originally went to him to him with a complaint about having sore throats for 2 yrs. It doesn't if he thinks it don't match if it keeps coming back positive it is then aps simple as. He didn't even ask about any other symptoms and if i wrote them all down he would probably think we got a right one here.

[reddogger in reply to RoseFlowerDew]

I would either push them harder or find another caregiver. You don't want to get to a Pulmonary Embolism for sure. Let me tell you my story. I live in New Mexico (soon to move to California). On October 1, 2020 - out of nowhere I had a massive Pulmonary Embolism, Heart Attack and a stroke all at the same time. The Pulmonary Embolism filled every lobe of my lungs left and right as well as my pulmonary arteries. I was literally minutes from dying. I was in intensive care for 5 days. It took me a year to recover and I am left with a "stretched out" right side of the heart and a shunt between the left and right side of the heart. I have never been the same.

For several days the doctors in the hospital kept looking for additional clots in my body to determine where the DVT occurred that started all this. They never found one. As part of protocol they were going to put me on blood thinners for a year. It was during that year that I started to develop overt symptoms of MCTD and ILD - complicating the picture. One day, while I was getting coffee in the cafeteria, I struck up a conversation with one of the techs from the lab. Eventually got around to telling him of the PE and he suggested that I should get tested for APS. My doctors would never test me because they told me I would have to go off blood thinners. So they told me to just assume I have APS and stay on Xeralto for life. Fast forward another year and I am at UCLA Medical Center after being told the wait for a rheumatologist in NM is 8 months. I asked them if I could get tested for APS and they told me that with Xeralto I can get tested. So they did and I tested positive for Lupus Anticoagulant and anti-Cardiolipin twice following protocol. However I was advised that if I ever tested positive for anti-Beta-2-Glycoprotein 1 Id have to come off Xeralto because there would be a high risk of clotting :-P.

So do whatever you can do to get the care you can - get it. Don't end up like me - you deserve better!

[Charts in reply to reddogger]

Its hard for me at the moment as I've got to wait 12 weeks to get tested for the 2nd time. The 1st test beta-2 glycoprotein igg was positive, then tested positive 1 week later (which is too close together) so now waiting 12 weeks! Its sounds horrific whst happened to you. I do get scared. Im getting numb arms and legs (especially when sat)

[Ozchick]

I got diagnosed with late onset Epilepsy about 3 years ago after having a seizure while in hospital. I have just had another MRI and get the results in April when I see the Neuro. She said not uncommon with APS and I've been seizure free on Keppra within a month of starting this med. Have to admit haven't heard of non epileptic seizures but the first Neuro I saw couldn't find anything wrong with me and it wasn't until I saw the Neuro while in hospital that I got my diagnosis.

[suntap]

Hi, I haven't been diagnosed epileptic but was having seizures. They then found I had several pulmonary embolisms. I think they put the seizures down to lack of oxygen as I had been very sick for 5 1/2 weeks before they found the PE's. I just put them down to more weird and wonderful symptoms this disease gives us. Take care.

[Charts in reply to suntap]

That's what I've put them down to lack of oxygen due to blood flow.

[GinaD]

After the birth of my 2nd child, I developed migraines, at first triggered by bright lights. The migraines morphed into emotional fear which I named "panic attacks." I also had a series of petit mal epileptic episodes which were eventually diagnosed as temporal lobe seizures. The seizures lasted over a few months, and the conclusion was that they were caused by post pregnancy hormone fluctuations.

But in hind sight, and after reading responses to your post, I think its logical to conclude that it was a combination of hormone shifts and APS. Since starting warfarin, I have had no more panic attacks (neurologist did an MRI and confirmed they were actually mini strokes,) no more petit mal seizures, no more migaraines. All is now well. Warfarin has become my best friend.

[Tkt3699 in reply to GinaD]

Warfarin is my saving grace.

[Charts in reply to GinaD]

Yeah the seizures are a weird one for me as the eeg was showing no activity. Well if I do get diagnosed with hughes syndrome and start taking meds if they stop at least ill know the cause then

[GinaD in reply to Charts]

me too!

[Tkt3699]

I had been having several issues, and was takin off warfarin after my son was born. I started having bad headaches, blurry vision memory issues and my left side was out of control! Seizures? Left arm was doing it all the time.... back on blood thinners and it doesn't seem to do it unless my blood is too sticky, when I'm stressed! Ah. Getting the diagnosis is the BEST thing. Get copies of your results please. I wish I'd had them, doctors retire, I moved and it's like I had to start all over again! So if I had known, I'd of gotten copies of tests/results! And once you are properly dx (diagnosed) they shouldn't keep running those 3 tests, unless you are in a 'study'(I'm in a teaching town). If you have Facebook there are groups for APS. I run the one with the sunset... along with 2 other ladies. They are all good tho. They are informative. After I got back on blood thinners it was much better.

[Charts in reply to Tkt3699]

Wow this could be the making of me if I get diagnosed! I'm feeling so unwell and I'm just not getting any good days. What seems to trigger you that's makes you feel worse. I seem to get triggered by the flu vaccine, contraceptive injection depo provera (which is progesterone) being on my feet for too long, hot water (can't bath only showers now) weirdly eating nuts seems to be a trigger (use to be fine with nuts).

[GinaD]

Your statement about nuts prompts me to suggest looking into Dr. Hyman's 10 day detox diet. There might be a food sensitivity lurking in your immune system.

[Charts in reply to GinaD]

Yeah this one is strange as eating peanuts causes me to have a seizure. Surely this is nothing relate to hughes syndrome? But maybe it causes an immune response

[GinaD]

Probably an immune response. Since going gluten free in 2004 all my APS tests are negative. For all my life I ate gluten every day and had no idea... Now, if I accidentally eat some ( a restaurant lied to me,) I know immediately as I am nauseous, dizzy, confused and with belly pains. I explained to the waiter that day, " Here is my credit card. Go ahead and charge it while I go to the rest room. I'm sure if I wait any longer I am going to vomit and crap here in your dining room. I'm sure you don't want me to do that. And by the way, " I said as i stood and headed to the bathroom, " this is what happens when you lie to a Celiac patient about which food has flour in it." ( The manager knocked on the rest room door and told me, " No charge for your meal Mam. And we apologize. Your waiter should have known better. We'll hold your card at the desk until you are well enough to leave. And should I dial 911? "

See, since I found and eliminated a food allergen, its as if my GI tract becomes like a 2year old jumping up and down having a temper tantrum. " NO! NO! NO! I thought the brain had finally learned to avoid this! I will NOT put up with this poison again! Get it out. Up and down! Get it out NOW,"

And this after years of eating gluten and suffering from random symptoms which doctors dismissed as unimportant.

[KellyInTexas Administrator in reply to GinaD]

🤢🤮💩💥💥💥💨💨🧻🚽… yup.

[GinaD]

An accurate summary!