Cerebral APS : Had this finally... - Sticky Blood-Hugh...

Sticky Blood-Hughes Syndrome Support
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Cerebral APS

Had this finally diagnosed early last year after a visit to ST Thomas’s. read lots and lots about all the typical symptoms but apparently mine only affects my brain. Was first noted by neurology that I had gone to with a bad memory and showed lots and lots of white matter lesions. Would love to know if the warfarin has improved my brain but can’t convince anyone to do a follow up MRI. As well as all my neurological and cognitive issues get the extreme exhaustion, muscle and skeletal pain. I find it hard to cope as medically it’s like I’ve been diagnosed here’s some pills no go away and manage your life.

I struggle daily and am afraid to say the warfarin doesn’t seem to make much difference to me. Got a follow up neuropsychology interview to see how much worse I am and then maybe my neurologist will give me another MRI!

Sorry rant over nice to find somewhere where people will understand what it’s like.

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Hello, and welcome.

I am very glad you have landed here, and you are in very good company. We look forward to being a resource for you, and we look forward to learning from you as well!

I believe cerebral APS was formarly known as Sneddons Syndrome. There is also a forum for that as well, which you might also consider joining along side this one. I’ve found a lot of the members on there are not as familiar with APS, sadly. Many have not been tested for the antibodies. Most are on warfarin.

You will find most on here do clot in limbs or other places, but lots of us also have cerebral APS along with other parts of our bodies. APS usually doesn’t discriminate to just the brain- it’s an “equally opportunity employer” - it will attack blood protein and vessel wall linings throughout the body.

I myself have a lot of neurological involvement, ( seizures, migraines, loss of balance, optic nerve atrophy) but as of yet do not have any identifiable lesions on my brain.

I’ve had one doctor tell me it’s Sneddons, yet I read on line that you must have lesions on MRI scans. I’ve been told dr Paul Holmes , an APS Neurologist in London, says that cerebral APS has replaced the more outdated term, “ Sneddons Syndrome.”

You just might be one who could help shed some light on this.

To learn more about APS,

Please have a look at :

ghic.world/

You will find that Dr Hughes speaks about the brain.

At any rate, you are definitely in the right place. Livedo R we share, the APS antibodies we share, the migraines we share, but most of all the comradary and support we share!

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Thanks that might be worth looking into for me

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Just edited and included the ghic website as well.

Please note a pinned post section the admins have attached for you regarding minerals and thyroid testing. We tend to be low in these and getting them up to level can help us feel much better.

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Kelly. A pinned post section sorry a newb on here not too sure what you mean?

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If you are on a mobile scroll to the bottom of your screen, or if on a laptop look to the right. It’s in a separate dedicaared section. Think of it sort of like a bullitan board of pinned posts the admin think are important. It will have its own subject title, I think it’s mineral and thyroid tests.

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Hi and welcome.

We help each other here by sharing our own experiences and giving support.

All of this is daunting and we end up like you doing most of our own research.

APS is sticky clotting blood that unfortunately goes around the whole body and can cause problems anywhere or even everywhere!

It might mean for you that tweaking or upping your anticoagulant may help your symptoms, don't give up, pursue this. It may need an appointment with a rheumatologist to rule out Sjogrens or anything else going on?

Thryoid, B12, are also other areas to check. As Kelly says look at the pinned posts for the exact tests.

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Thanks I have been looking at sjogrens and looks like I have many of those systems GP here I come but he’s a good guy and has read up almost as much as me on APS this might be another learning area for him!

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Hi, and welcome, there is a pinned post about this, and I agree for myself and others, that it is best to test your Thyroid thoroughly beyond what your GP or the hospital does, also your B12, (an active B12 test), plus your vitamin D, folate and ferritin to complete the whole picture alongside your Hughes Syndrome/APS, also a lot of us can't tolerate gluten. MaryF

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Mmm...think mine is just brain.I do have the levido reticarlis but mine is memory, balance,movement disorder where I trip jerk and catch foot on ground .I go in phases were I can hardly walk even aided especially after a body trauma or even having to lay down for MRI or dentist then to walking with these problems aided and unaided.I do have lesion on brain associated with APS .was told rare manifestation in APS

Same with me warfarin hasn't changed symptoms. I do have RA and Fibromyalgia plus other things so other symptoms get entwined and doctors struggle with me

Just tell your neurologist you would like a repeat MRI

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Oh... have you been told you have , “ cerebral APS”?

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That’s what the professors letter said in reply to my local rheumatology dept who referred me to prof Hughes clinic

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No Guys hospital described it as a complex movement disorder in APS another said rare manifestation in APS

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That’s what I remember. Now I’m wondering about this. Might just be this sub classification. I believe it almost Has a hallmark livedo with it. ( neuro and livedo are so strongly linked. It’s the same little arteroles involved.)

I’m not sure i it ever cleanly fits in a particular little box completely, but maybe more in the general direction of a category. This maybe yours.

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Hi Fra,

I wonder if you are selftesting nowadays? How often do you cheque your vein-values at a lab? What therapeutic level are you put on from your APS-Specialist?

I ask as you say that your Warfarin has not changed symptoms. Who has diagnosed your RA and Fibromyalgia?

Best wishes!

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I will private message Kirsten so I don't hijack this post

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You can do that if you think it is a bit private, but as you know we learn a lot from eachother how to get properly anticoagulated by veindraws and selftesting and what GPs and Specialists can take care of as responsible for our care as to diagnoses of different autoimmun illnesses.

It is sad that the anticoagulation with Warfarin has not changed your cerebral symptoms we are talking of here.

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Yes reply privately but yes warfarin has not changed things really Kerstin

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Greenmil3

I am sorry to say but the areas of white matter n ur brain will NOT heel as it is likely that it is dead brain tissue from CVA that cut off its blood supply. I to hav multiple regions of white matter and many of the same symptoms, or have more symptoms as u probably do aswell. The only point in doing another scan is to look for more damage but is pricey and not really needed. The brain can do amazing things but it probably will not ever be able to fix the damage. If u have a scan make sure u have them compare it to ur existing scan. That way u get better info. The warfarin is to help stop the blood clots it can not treat u only help to stop or in my case slow down the number of TIA’s, CVA’s and stroke. U can help urself by keeeping ur INR in the perscribed area most APS patients it’s between 3 & 4 sometime as high as 4.5. Also playing brain games in ur free time seems to be helping me. I continue to decline regardless of INR, high amounts of warfarin and plavix together (Which is highly ur recommended) . But it does the best for slowing my downgrade. One more thing is u have a scan and the radiologist is not familiar with u and says the scan looked good no problems!! Question that reading and have it compared to the last one so u can get a correct reading, as the white areas are not going away. Without a mirical! I’m sorry to be so blunt but it is what it is. The brain has the ability to rewire and using different areas then before! So u can get a little better by retraining the brain. What I do it tell myself ok here we are now accept it and move on. But always Continue to fight it!

I hope I made some kind of sense. I wish it wasn’t so.

Soul Rebel

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Thanks Soul Rebel my neurologist is waiting for the result of my neurophysiology interview as my last one was about a year and a half ago I think as I can’t remember! Once he discovers how bad the deterioration has been he says he’s open to another MRI and as he’s the one who did the first and found the white lesions he can do the comparison for me! Nice sort of to know there is someone else out there who actually has similar issues to me

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Hi and welcome !

If you want your Warfarin to work you probably need to be on ev higher INR-level. Most of us with neurological issues like eye-issues, brain fog, dizziness, vertigo and general migraine and sudden headaches need an INR between 3.5 - 4.0. You also need to have that INR stable otherwise it does not work for you. Now I am not talking about the white matters on MR.

Have you selftested?

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Hi lure2

Guys put me on the typical 2.0-3.0 but I think it needs to be higher I’m stable at about 2.6 and self test.

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Yes, I think you need a Specialist who also knows other autoimmun illnesses like Sjögrens (you talk about that) who will let you doubletest (you selftest already) in the vein at a higher INR. Several of us with cerebral symptoms can tell exactly when the symptoms disappear at a special INR-number. '

But we must not forget that we are all unique even if we share APS. We have to educate ourselves and then we know when we get to a Doctor who knows what we are talking of. What a relief.........!

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I can absolutely relate to how you feel! In addition to neuro, breathing and other symptoms over the past six months, I have had trouble walking and using my hands for over a week now, yet it seems to not be an emergency to anyone.

I just found out my second test for Beta 2 came back positive. So while I am not yet formally diagnosed I can only reason since they didn't find any other cause that is APS related. My inflammation levels, CPK and so on came back normal. But none of that helps you to know when you feel like garbage. Bottom line is, I'm with you in spirit. I feel the struggle just to do "average" things and have people look at you weird. Try cutting open an avocado with problematic hands. Ha ha.

I had been struggling to get an MRI of my back and head. The only way I accomplished this is when I demanded more treatment than to be brushed off. They sent me to another ER with more resources and I finally got the MRI. Also, on the basis that it was an emergency service the insurance couldn't deny me. Hope you find some help and peace.

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You are in the USA. Where are you? Maybe I can help.

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I am in New England

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Are you close to NJ by chance? Do you feel you have a good Rheumatoligist?

I myself am in Texas- but I can recommend a very good Rheumatoligist and Hematologist in NJ

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I’m going to switch to the private message function if that’s ok with you, so we do not hijack this thread.

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Thanks kelly

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So sorry to hear you are struggling. I personally have a lot of the neurological symptoms myself and at times devastating and downright frightening so I totally understand what you’re going through. I hope your next MRI is better. Take care. Holly

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Thanks Hannah it’s really no gun at all is it?

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Hi, sorry to hear you are having problems. It's a little worrying you are having problems at St Toms. See if you can get an appointment with Miss Breen at the clinic, she is brilliant. I had sagittal sinus thrombosis due to APS (diagnosed after the event). I haven't got any lesions thankfully. Are you prescribed hydroxychloroquine? This really helps with my flare ups and general muscle/joint aches and pains.

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Hi debatwistow

Yep am on at the moment warfarin, Pregabalin, amitriptyline, hydroxychloroquine, amongst others lol not having an issue with St Toms the prof I am seeing is great it just feels like you are cast off for a year but I guess I can always call and get seen but just waiting on my neurologist to see what he says as he understands APS quite well for a non specialist.

Will post an update after my neuropsychologist appointment and follow up with neurologist

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Yes it does feel like that sometimes. You are left to get on with things unless there is a problem. I don't feel my GP and other medical people are really interested if I have an APS problem. Only interested in a quick fix.

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Yep my GP is a top bloke for medication for the symptoms but feel like I can’t abuse that by being round there every other week! And the hospitals will only jump when I have a stroke or heart attack I suppose 😂

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So you are in the London vicinity?

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Yep live in Essex so about 1/2 hour away from London

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As you know, I’m the outlier here in Texas. I do, however, have a very good neurologist.

I started with him in 2012, before my diagnosis of APS in late 2016.

He did specialty training many years ago at Queens Square or Kings Square. ( trust. ) . Which one is it that prof Cath Mummery is with? One of the two is particularly known for speech and neurological aspects. Prof Mummery is quite known for her work with this area of the brain . I’m going to tell you why I share this info with you in a moment.

A fair share of my key APS specialty consultants are In London. I see Prof Hannah Cohen for Hematology, ( UCLH) Professor Toby Richards ( at the request of Hannah Cohen)- UCLH- for vascular surgery, and Both professors Graham Hughes and Natasha Jordan with the London Bridge Lupus centre.

About a a year ago I was very briefly in contact with neurologist Professor Paul Holmes of London via email. The idea here in the states amongst my interdisciplinary team, was to ask him about his ideas on immune modulation and the brain in the anti Phospholipid syndrome. He is very interested in this aspect, and is proactive in a certain sub set of patients.

This is why I have suggested Professor Paul Holmes to you, if and only if you feel you might benefit from an additional perspective on APS and the brain. He is linked to additional neurologists like Cath Mummery for what we call neuro cognitive testings. I think you call the something metric testings? It shows subtleties in brain functions in very specific regions of the brain. ( mine are also declining and it’s very embarrassing! I’m trying to figure out what could be break through little seizures symptoms, medication side effects, sub therapeutic INR symptoms, or just APS doing damage in other ways we may or may not yet fully understand. “Immune modulated response.” Don’t ask me to explain that- that’s where an advanced medical degree in neurology and immunology would be necessary! What I can tell you is that it is a very strong working theory- I’m not sure where Specialist are with it.

This is where the discussion of immune suppression comes in. Stop the damage up stream- ( immuno suppression) don’t just put a plaster on the problem downstream. ( warfarin.) Biologics like Rituximab are shown to affect fewer T cells than other agents- more specific ones to our particular problem. I’m forming new DVT’s every 10-12 weeks on average despite a high INR. ( 4.5-5.0) I clotted through clexane as well. We even tried high intensity Apixiban - just to see- and clotted through that rapidly.

So through the careful process of trialing all options, and scanning carefully to demonstrate new DVT’s, my Texas doctors decided together that Rituximab was the correct next step for me.

A year ago my Texas neurologist and Hematologist here in Texas was interested in trying what Professor Holmes was doing, and his monitoring methods of his APS patients. My doctors here were willing to work with him and replicate exactly what he was doing if I went for an initial consult with him, set up scans here, what ever he felt comfortable with.

He felt he wasn’t quite far enough along for my particular case. Now That I’ve trialed every thing possible anticoagulation wise, I’m now being put on Rituximab. ( very different to what he is doing. ) This should begin in about two weeks.

Being from Texas- I am unclear exactly the ins and outs of switching systems there. Your trusts and historical founding of the institutions are fascinating, and very complicated in today’s administration of their inner workings of them as it applies to the daily life of the Uk citizen... much less the poor foreigner trying to work it out!

( we just admire the marvelous architecture, city, and history. I’m assuming Prince Albert and Queen Victoria had something to do with these trusts... knowing their dedication to public service... here I go off to google... I somehow think the money must have been established before their time... she’s quite a modern queen in your history...now I’m off to study this! )

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Hi, this seems to be a similar story with the NHS from now on. It's cheaper to palm you off with the cheapest treatment. I haven't had a good experience with the NHS recently (apart from St, Toms). They were treating my mum for arthritis of the shoulder for over a year just giving her more and more painkillers which did more harm than good, turns out she had lung cancer (shoulder pain is a symptom of lung cancer), GP's and hospital missed it and she died within 2 weeks only after I made a fuss. I can only advise know your stuff regarding APS and be very forceful with the medical profession. Don't take no for an answer!

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