First off I want to say what a gift it is to have this forum and to get the support that is so much needed. Thank you - I am going for neuro psych test this week and wonder if anyone has any information on cognitive impairment and APS. I have also several blood tests, ct scans and mri's and they are all showing no abnormality, however my head feels as though ice picks are being thrown at it. Any ideas or suggestions on if this is APS related and how I can prove to my doctors that there is something wrong ?
Thank you all.
Written by
APS1993
To view profiles and participate in discussions please or .
I do not know if you now have found an APS-Specialist of autoimmun illnesses and if you are on Anticoagulation for your HS/APS.
I am triple positive with high titres and have had a lot of neurological symptoms before Warfarin had kicked in at a rather high level. I have had mini-stroke or mini-clots and mini-emboli and they are not seen on a Scan of today as they are so very tiny.
A Specialist knows that the tiny clots may go with our illness. Neurological symptoms are the most common symptoms of this illness. You say you have had heart-issues also and i hope you do not go around with too high bloodpressure.
I suggest you read "Sticky Blood Explained" by Kay Thackray. She has had neurological and also heart-issues with APS and writes about her different symptoms. There are two books written by Kay but read the first book (mentioned by me) first. It is also a good book for relatives to understand how it it so live with this illness.
If you get a Specialist who has had patients before he knows how to treat you and understands what you talk of I am sure. Good Luck from me to find that special Doctor!
thank you - I am working on finding a specialist. Hoping the hematologist that was suggested is knowledgeable. I do have a plan B meeting with one that someone on this forum used. This is not easy finding the right person . Also I have read Kay's first book and am going to look for her second. Thanks
Our list of recommended specialists is under pinned posts over on he right hand side of the forum, you are right to strive for a dedicated specialist. Many of us have a mixture of migraines and headaches, it is vital to get the right medication and support, and also to test for thyroid problems, also vitamin D, B12 and Iron, alongside any need for anticoagulation or Aspirin. If they decide you have ice pick migraines you may need the help of a migraine specialist, some people go to The London Migraine Centre which is a very good charity, where you can self refer. MaryF
Welcome! This is a very difficult, but important concern. This will depend on whether your doctor has an understanding of APS/Hughes and autoimmune diseases. As others will say, you need a doctor who understands these conditions.
There are doctors who refuse to address the symptoms unless they have "physical" evidence ie blood tests and scans/MRI. However, blood tests can and do change and just because there is no brain involvement damage, does not mean there isn't a problem. Unfortunately, some patients are made to to feel as if "it's all in the mind" ie stress, anxiety etc
You are having a neuro-psych test, but as many will testify, some days are good and other days, it's like walking through treacle-in-the-brain.Therefore, you will need to explain what is going on for you.
Headaches, migraines etc are symptoms of APS/Hughes but they are non-specific unless they form part of an overall clinical picture,which can be interpreted by the physician.
I can only reiterate that you need to have a specialist doctor.
Ros your reply was quite comforting. Can you tell me if there is any research on neuro psych issues and APS that I can read and bring with me? thank you
Yes, I have normal MRI scans and MRI with contrast ( venogram.) despite confirmed temporal lobe epilepsy ( Confirmed by EEG.
I also had a TIA 6 weeks before confirmed diagnosis of APS . TIA resulted in extreme confusion and GI symptoms. I went to bed for 24 hours. My husband told me " your left side of face - eye especially was a little droopy." I was so " out of it I just went to bed. This was on a Friday- I saw my Family doctor on a Tuesday. I asked- should I I see a neurologist? Have an MRI? I'm between the 12 week wait period for APS results?
He told me symptoms of TIA had passed, yes I had likely had a TIA, nothing would show, and there was no way I had APS, abnormal autoimmune "stuff" showed up on people all the time. I should ignore all those tests.
Anyway, another rant for another day. We've all have similar stories!
Anyway- yes. My neurologist is testing me intermittently with neuro cognitive function tests. They are declining in hand writing, spatial relations, and mainly short term memory- word recall.
I'm also , as far as some brain testing - showing major testing abnormalities on optic nerves in eyes. My hematologist said they are actually little strokes.
My understanding is that newer thinking in neurology is that PET scans of brain may reveal more. Specifically hypo profusion and lower metabolism. The test may measure slower absorption of glucose? It may be only a smaller sub set of specific APS patients who fulfill certain neurological criteria. I'm not sure.
Kelly thank you so much. I had a stroke in my right eye back in 1993 when I was diagnosed (unfortunately that doctor is no longer living in the US). It was what led to confirming the APS. I am embarrassed to say that I have ignored many of the symptoms I see now are related to APS thinking I was being a hypochondriac. I am now interested in learning as much as I can. Such as what are titres? Do you know where I can find an article on neuro cognitive issues and APS to bring with me?
Titers are simply the numeric value of the antibody , or even more generically stated, can be substituted for the word "antibody."
For example, " I have anti cardiolipin titers." " They are in the low- medium range."
Makes sense?
As far as a " stroke in the eye, I find doctors, depending on their field of specialization, can get ( to my mind) a little slippery with this "stroke" definition.
A neurologist might have a very " bookish " as my hematologist likes to say, conniption fit over the loose term my heme put forth.
It was a lack of blood flow ( an ischemic attack ) to the eye. It was to the tiny capillaries supplying the nerves.
Stroke. Yes. Clot?
I'm trying myself to understand the difference between "sludge blood" and "clot". The end result is the same I'm told. Ischemia. Treatment and size and location can vary. A large clot in artery- may need activase via a untrasonic vibrating cath if INR is high- for example. If clot is in brain- Same - but no cath- Activase like med.
Eyes and spine can be similar wth regards to balance issues.
A good neurologist will understand neuro cog issues. Very common with Hughes. Dr Hughes said sometimes the INR difference between 4.0 and 4.2 can make all the difference.
I can't think of a journal off hand, but rather a you tube video with dr Hughes and a few other doctors speaking at " patients day" Hughes Foundation .
"Memory loss and dementia "
It's only just under 4 min long. With dr. Hannah Cohen also- hemeatologist and another doc, a fellow Rheumatologist.
I have as I said before had a lot of neurological symptoms. This illness is lack of bloodflow to the brain and therefor the Warfarin is so important that it is on a rather high level, 4.0 or even a little higher for some of us.
A Specialist and good anticoagulation is the first and best step to feel better.
Kersten - you are right. I have found my " happy place😊" with my INR finally. It takes 16.5 mg of Coumadin 3 nights in a row, and 17mg every 4th night on average to achieve this. I've been doing well and very steady with minimal symptoms for almost three weeks. ( only one migraine and INR was ok. So...?????)
It's between 3.8 and 4.2 finger prick and confirmed when vein value is .2 less than finger value.
( this can vary greatly in figuring out despite all other variables like greens, overall health, and no medicine changes staying very steady. I theorize that I may very well now be LA but I don't know how to test for that now that I'm on warfarin.)
Well, I am still having some trouble. I’m needing 17mg about every other day now. My machine read 3.8 the other day but was really 3.08 by vein. Big discrepancies lately. I really think I may be triple positive now. The oroblem was I couldn’t get Hospital results until next day. ( yes I’m working on that glitch.)
My new INR is set at about 4.2
I get symptoms any lower than 3.8 now. Cephalic in both arms clot and superficial s in legs clot and bleed out. Vascular surgeon calls it “biliverden” and the other one that is purple in color from hemagloben in tissues. ( from congestion/ clots.)
The last we communicated regarding your Coumadin levels, you were on around 12 mg of Coumadin daily. That was in Jan 2017, as I see it from a question I posted around that time. What strength did you go up to before you were switched to daily Lovenox?
You say here you were “ on about the same strength as I am on now.”
My doctors are telling me it’s unusual to have to keep increasing my Coumadin needs and INR like this. ( this aggressively.) They are fearing there may be an additional problem ( clotting problem) going on with me in addition to the APS. They are checking a few things right now- still waiting results. This is why I ask.
I thought I listed in my profile, I can't remember at the moment?
I went back in my history and last I found written was 12.5 every day except Sun & Thurs when I was at 15mg but I know this wasn't holding and he had increased it up because we were trying to get my INR above 3 and I was hardly eating any vit k and was concerned... I hadn't been prescribed any lovenox for coverage and my INR was only being checked twice a week. I was very nervous.
It was around that time I had faxed you the information with the vit k food values, along with the mug cakes, your assistant liked so much.
Hence, my frustration/fear and wanting to be switched to lovenox. I take it twice a day, every twelve hours: I find 10a & 10p work best😜
This is why when you were concerned the lovenox wasn't working for you I started questioning if it may not be working for myself.
As I had never heard of it not working for someone before.
You explained to me at that time- " the docs told you that this was a very "rare" occurrence".
If you have any other thoughts I can assist with please let me know.
I'm not getting out as much because of the dampness in the air and I am having some balance problems so am going to be receiving more physical therapy. They are trying to get me scheduled... Say a prayer this will improve🙏🏻 Thanks.
Stay healthy my friend, I am always thinking of you🤔
Thanks Cindy! I’m trying to figure out how “ normal” it is to keep getting increases in Coumadin like this. My specialty heme , who has a few patients on higher doses than me, very correctly doesn’t worry about the amount of Coumadin a patient is on. It’s irrelevant. What a patients body needs is what a patient’s body needs. What he is not liking in my particular case, is we will get to my target INR, let’s say if 3.0, and maintain for two weeks, then it ranks to 2.1. ( of course this was earlier, but this trend continued. ) now I am exhibiting the same trend, but we have set INR now between 3.8-4.2. Same thing. I’m holding a little steadier, but not as steady as a normal APS patient should. ( this specialty heme ). My normal heme who is also focused on heme more than oncology says the same- and had adjusted my INR to 3.8-4.2 - ( actually I just did it and when I proved I was alive and well he couldn’t prove otherwise!) I did it wisely by getting a vein value every third day. I needed the actual data for accurate support.
The point- my INR continues to back slide despite reaching target. With this high of INR this is unusual. It’s more usual to see it at 3.0 , 3.2 or lower, but not at these high ranges.
We are trying to rule out other co concurring conditions at the moment.
Hope you get your lungs better and balance better. Breathing is important. Staying upright is important. Being able to both simultaneously... priceless. there’s got the be a MasterCard pun in here somewhere but it’s too early to pull it off properly so I’m going with prayers for you, my friend.
Oops, I thought I was replying to Kelly in Texas 're finding her happy place with Coumadin. I regret the confusion anyone felt as the reply ended up at "cognitive. .."
There a a few of us on here that have been having issues with the brain. My MRIs are all good and they thought it was more psychological. Was then seen by dr Paul Holmes at guys who did a PET scan which showed abnormalities.
I am currently waiting to be seen at the London neurology hospital to have further tests. Dr Holmes thinks it’s the APS antibodies and prof hunt thinks it may be blood flow. We shall see.
Ask for a referral to dr Holmes. He has 14/15 of us with issues like this now.
I read before that they thought of giving you a Heparin-trial to see if the symptoms reduced. Have they now decided to give you anticoagulation as you have high antibodies? Prof Hunt thinks it is the blood flow.
I must say that I can not understand what they are waiting for ...... a clot? We know that some of us have micro-clots and they are not seen on Scans.
Is it impossible to be on anticoagulation while doing the new brain-tests?
No prof d’cruz says not at the moment even though triple positive in high titres and suspected tia last year. They want me to see this dr mummery, I was referred at beginning June and when I called to see how long wait was, was told minimum of 5 months 😞.
There is another lady on here who was anticoagulated when referred to dr mummery, I think although she felt better, the scans didn’t show a marked improvement.
In answer to your question, yes I believe they are waiting for me to clot! That’s what I was told 18 months ago. I am constantly being scanned for clots.
Ask one of your Specialists if it makes a great different to the tests on the brain they will do, if you start anticoagulation now? Can they make the wait shorter perhaps? Ask!
You know, Kersten and Bacardi Babe, I think I may need to visit London again. Despite at being on almost 17 mg of warfarin every other day now, I’m still having a lot of problems still clotting. ( superficial veins and specialty hematologist says it’s nerves - micro emboli- clotting controlling muscles around veins and capillaries also as will as the capillary walks getting attacked by antibodies and protein problem attacking blood itself. This is the nerve problem in spine ( balance problem that’s common) and optic nerve atrophy . But I’m having a lot of central brain processing problems. Neuro Opthomology shows this and neuro- otolgy ( balance- vertigo- tinnitus testings- showed this also. ) neuro cog is showing this. Large DVT, Smaller clots, and micro clots. Seizure disorder from micro clots in brain.
My new INR is set 3.8-4.2.
It keeps needing to be set higher - more Coumadin is needed to keep it from falling.
I am very sorry to hear this. Have they done a DT Datatomography) on your brain?
Good that you INR is set to 3.8 - 4.2. I also need a high INR today but I need less Warfarin at the moment (take little more than 4 mg/day). This is complicated and difficult to understand. Hope the Doctors understand!
Ok, added swedish to my keyboard. It’s a CT scan. Yes, I think I’ve had one , but many years ago when my neurologist was considering brain surgery for “irretractible epilepsy.” He was looking for an area of cortical dysplasia deep in amygdalala and hippocampus . ( where cortical cells did NOT go to cortex but instead “ got off elevator” too soon and went to wrong place in brain in embryonic development. They misfire there- deep in old part of dinasauer fight or flight brain. They will show as a little milky streak like a feather in scan- brain surgery removes these cells. Amygdala- hippocampectomy. I was sent to John Hopkins in Baltimore for evaluation of this surgery because it is a very serious brain surgery. But it’s the only Actual cure. Medicine just “controls” epilepsy. I kept having “ break through” seizures.
Of course I did! Also, the scan could not find these cortical cells in the wrong place. ( because they weren’t there. That’s not why I was having seizures!) so surgery was aborted.
Bacardi babe, my neurologist did a venogram with contrast to study blood flow of arteries / veins in brain about two and 1/2 months ago. All was perfectly normal. INR was good / high during that time and that week. No problems with “ focal narrowing” or any problems seen. No past injuries- all clear.
Bacardibabe, I can’t remember ( 😂) so sad isn’t it, if I’ve responded to you regarding this or not, but I think you are aware that you and I share a very similar case.
If it helps you to know, two months ago, my Texas neurologist, Dr Anand Mehendale, performed a venogram with contrast just to look at all the vessels in the brain. He was curious to look it at it this way, a new way, and to have this base line for future reference. Venogram to eyes are fine, done independently by neuro Opthomologist Dr / Professor John Carter of San Antonio Texas. However, I have quite pronounced optic nerve and retinal nerve atrophy with central brain processing issues associated.
My MRI scans are clean, no white spots.
Dr Hunt may like to know I’m having a lot of micro clotting to my nerves as well. ( example, eyes. Balance problems- spine. Bowels.)
Vascular surgeon says spasms to muscles- around veins - causing acute clots resulting in migratory phlebitis. And DVT’s. Phlebitis can be accisiated with nerves? Maybe he said. Very possibly they are clotting. He said he himself has never thought of the question in that way because he does not handle APS Patients but it’s a very plausible assumption . The muscles must the innervated by way of nerves, he said. If I’m having problems in one part of body, it stands to reason it should occur throughout.
( I go into paralytic ileus. Heme and gastro and colon rectal surgeon say I’m clotting into bowels and nerves in bowels. I’ve had many surgeries . We had no idea problem was APS . Gastro problems mostly vanished with warfarin/ we call the Brand name here Coumadin.)!
I have confirmed epilepsy- partial complex all stemming from right temporal lobe. Scan do not reveal cortical dysplasia in the amyglala/ hippocampus/ area . I was investigated for brain surgery at Johns Hopkins for Amygdalahippocampectomy for irretractable seizures. If they were to have found the cortical cells in the wrong place deep in the brain, it would have gone to brain surgery, provided I did well on the WADA test. But , the cells were not found. Of course not! The seizures were from micro clots- just not detected. They were looking for cortical dysplasia!
2. I am on high doses ( 17 / 16.5 mg ) of Coumadin for large DVT’s.
3. Positive for B2BP1 and ACL Antibodies and rather low numbers.
4.also positive for the additional pro thrombotic, or Eliza Antibodies.(!phosphotidelsteriline)
5. Our 16 year old son just tested positive
6. My mother very likely died with this. Clotted clotted clotted. pulmonary embolisms, etc. my sisters were born with problems due to pre eclampsia prematurely. She lad a leg thrombosis and PE after my birth. I lost her in my 20’s to clotting complications.
7. We have had multiple miscarriages. One horrific ectopic rupture that almost took my life. Then again I was in my early 30’s . Just before I had our son. I maintain poor blood flow was to blame.
I hope this may be of some help to you, and prof Hunt. I can’t imagin how, except the venogram info to Hunt.
You have mentioned dr Holmes. My husband is ready to set my appointment with him. I’d rather get the testings ( scans) here under my insurance so it wouldn’t be so expensive.
My doctors ( some) are thinking we may need to start looking at some immune modulation. They are not sure what is best practice . There is no “ best practice” right now. My eyes are continuing to show optic nerve thinning ( decline) despite high INR. ( 3.8-4.2) sometimes of course it dips. Some other action is at play, but doctors test for all sorts of other auto immune antibodies . Can’t figure anything out.
I hope my info on the venogram helps you. In some ways I think we may be similar.
Wow Kelly, you certainly have had so much going on 😞
Sorry I havent been with it So not really checked in on here.
That’s a lot of info and really interesting. I have never heard of a venogram. Not sure they would do one here but I will definitely mention it.
I thought a lot of my problems were my lupus which always seems to be active but it’s only a little active due to immunosuppressant and new drug being trialled. But now I think a lot is definitely my APS and they seem to be seeing it does so much more than the clotting and the other usual symptoms.
Have you asked if you can get a pet scan? To see how else it may be affecting you? Apologies if asked that already, brain is not in full gear 😂😂.
My 5 year old son has issues with his clotting, he doesn’t have an inhibitor and so they tested him for haemophilia but only for a couple of the factors. I thought they ruled everything out, but no not all tests and then said oh he’s fine. Took him back again and haemotologist doesn’t want him referred to them but a paediatrician instead as he still gets petechia really easy. So now waiting for that apt.
Just seems to be a waiting game now, putting up with the symptoms and waiting for my further testing.
Stick with me, Bacardibabe, even if it’s PM. Believe me, I totally understand the frustrations and fear you feel with your brain, which seems at times to betray you. ( you could never tell from your writing here, So don’t worry!)
Firstly about your son. I developed ITP ( ideopathic / Immune thrombocytopenia purpura at age 18 months of age. I’m now 48.5 years old, so that was many years ago, long before they knew of APS/ Hughes. I had not been ill with a viral infection prior, so that was the determination of the status ,” idiopathic.”
At first it was though to be leukemia, then quickly determined to be ITP .The WBC count was extremely low. The platelets were at 3. I was hospitalized - needing the spleen removal, but too ill to survive the operation as surgery those days were not keyhole- but much larger.
Massive steroids were administered , and a few weeks into it I did recover.
It was considered a ,” blood dyscrasia” in those days. They did not even recognize it as an auto immune disorder/ response. The ,”I” in ITP simply stood for idiopathic, because a viral infection had not proceeded the event.
So certainly in my case I went on to have problems. My mother was a “clotter” and migraine sufferer. And of course our 16 year old son has been diagnosed.
Yes, I’m thinking now a PET scan is a good idea, but with what end result? That’s the question that seems so elusive to me. Can you help answer the question?
1. What specific questions are professor / Dr. Holmes asking about APS patients and his study that the PET scan specifically answers?
2. Is it a standard protocol PET scan ?
3. What is achieved with these answers? Is the answer different from patient to patient? ( refer to question one I think is this answer. Must be linked.)
4. Is he considering immuno modulation -vs- immuno suppression?
He must be thinking to do something a little different or would just stay the same old party line of ,” stay on warfarin.”
5. This is affective for a small subset of patients who are needing high intensity warfarin but still having livido and neuro manifestations like declining neuro cog testings, correct? Inegmatic patients not responding to traditional APS therapies and still clotting with cerebral APS. Correct?
( im pieceing together several different posts over a few years regarding dr Paul Holmes from a few of his patients trying to understand the scope of his work, objective, method, outcome projections, and treatment plans with data outcomes.)
Wow Kelly you have gone through so much. What a fighter you are 😀.
I am definitely watching my son closely at the moment and at least I know more about clotting than most parents so I can be more of a pain 😀.
I will try to answer some of your questions.
1) I can’t remember 😬😬
2) I don’t think it is, I think because MRI is normal and I was experienceing so many symptoms and he’s had abnormal PETs for other patients. So think he will scan more going forward.
3) I don’t know what he’s achieved as yet, he told me he felt kinda hopeless as he had no answers as it’s a relatively new find in patients and hence why I have been waiting months for apt with the specialist numerology hospital with Dr Mummery. I believe dr Holmes wants to collaborate with her more on us.
4) he has spoken about immunosuppressants. I am already on an immunosuppressant as well as on a drug trial which I believe is an immunomodulator. But all it has done has changed how my lupus behaves and not my APS.
From what I have understood from another one of his patients they swapped them onto another immunosuppressant. The problem I have is that I can’t swap as I’m on the drug trial. So I have to think as to if I want to stay on in dec for another 3 years. The answer is yes I do want to stay in the trial as it’s helped my lupus and when I missed one infusion I went into flare. Plus it means I get seen monthly by the people who come to know me and built a relationship with. I would only been seen every 6 months and my local rhuemy is a joke 😞.
5) I am not sure, they have argued about anticoagulating me. I like you am triple positive in high titres. But only on aspirin and clopidigrel and the hydroxychloroquine and methotrexate and drug trial. There is a patient here with the same who is angicoagulated and it made no difference. I have good days and bad days with my Brain.
I still get a little livedo and one leg goes bluer than the other, always the one leg though.
I do know he wants to investigate this much further as he has like 15/16 patients presenting like this now.
Not sure that answers it all, I had to re read and Brain wants a nap 😞
Thank you for taking the time to answer me so thoughtfully. We are all learning as we go along- doctors included. Im learning perhaps I’m trying too hard to pinpoint specific answers , and there may be none yet.
I keep reminding my self this is not strep throat. You can’t just swab and get a result.
There is a saying in England we don’t quite have in American English. “It’s still early days...”
It’s hard to commit to traveling abroad ( yet again) for consultation, especially when it involves numerous follow ups. Perhaps the follow up scans could be arranged here - who knows.
When you say it "dips". How much? I am changing my warfarin-drug just a little as I am too high so I selftest every day. My Hematologist knows I do and understands I have to do that just now.
Can you avoid those "dips" do you think? Then you at once take a Fragmin-shot. Right? Have you ever had a bleed when the INR is too high?
This is the problem. We don’t know why I’m “dipping “ or going too low. It’s unusual. I can read 4.0 by finger prick on machine, but have a migraine and livedo and balance problems, so I go to hospital, where I have a standing order for a vein draw for accurate value, and it’s 3.0, so yes. Then I inject. I think perhaps I have now “ picked up” the third anti body Lupus Anticoagulant, but I don’t know. It was negative initially but I developed a DVT almost immediately after my 12 weeks testing so was commenced on warfarin so can no longer be accurately tested for LA.
Last night I was 4.8 by my machine. Felt great! No problems. No problems at all with bleeding.
Last weekend I dropped a heavy shampoo bottle on my foot in the shower and got a normal bruise , like anyone would. In one week it was gone. Like a normal person.
When I get a little cut, I bleed- but not too much. About like a normal person. I have never had a bleed.
I’m having no trouble with bleeding, although last nights reading was a little high.
What about the doubletests. I have done so many doubletests during the years and have written them down. My daughter Karin has made a diagrame and as my differences are about the same I can at home know what my real vein-value is.
When I am on 5.2 - 5.5 (around 4.0 in the vein) I feel fine. I have been on 7.0 a couple of times and never had a bleed not even when brushing my teeth. When i am on 7.0 (which is much too high I may have perhaps 4.8 in the vein) I take it down with 12 brusselsprouts in 15 hours. A very high INR on the machine makes a BIG difference between the two. I
When i started Warfarin I had a much lower therapeutic value 3.0 - 3.5 and then the difference was only 0,6 - 0,8 between the vein and the machine-value. I now try to keep 4.0 (vein) and my Specialists know about it. My therepeutic level is now 3.5 - 4.0 but i would like to have like you, 3.8 - 4.0.
So as you see I do not have to go to the hospital to find out what my real veinvalue is as I have it in my head and can look back on my notes and my diagrame (when it is very high). If it is too low I get my symptoms back and then I take a Fragmin-shot. I can go to the hospital any time i like and take a test in the vein.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Random head pains
Warfarin and Clopidogrel
'Growing Pains' in arms and legs
Anyone with a similar experience?
