Am I really the only one?

While inquiring about people in my immediate area who also have APS, my rheumy told me I am his only patient with APS of the brain. I still don't fully understand this. Having a blood disorder you'd think it would affect your whole body.

Is there anyone else that has been told "it's only in your brain"?

29 Replies

  • Hi

    I've never heard of this and, as I understand, the antibodies are in the bloodstream and travel everywhere in the body.


  • That's what I keep thinking. My neurologist agrees with him. When I asked her to explain "only in my brain" she said it's attacking my central nervous system.

    My rheumatologist said it affects my arteries not my veins. I don't fully understand any of these explanations.

  • Since deep vein thrombosis is a common problem, I don't understand the rheumatologist's answer.

  • Maybe he is a Neurologist.

    They do not always understand that we have too thick blood.They do not know what to look for. That is why a Specialist of APS is a must to be correct treated. Then we can be remitted from the Specialist to those doctors he wants us to see and he will get the answer back.

    There are also very few patients with APS. There is a chief-Neurologist I have met who has treated APS-patients. When he heard in 2002 that I had all those antibodies and also in very high titres he said that I was probably the only person in the Stockholm-aria with these. APS were more unknown in those days.


  • Wrong from me. I see now that he is a Rheumatologist and not a Neurologist. I agree with Dave anyway.


  • I have both a rheumatologist and a neurologist. They both say it's only in my brain. On another forum, I did have someone who said they had only heard of it once before.

    This is a fairly new disease... maybe there is still more to learn and know about it.

    There is a specialist in another city I may contact to maybe get more answers and understanding.

  • Prof Graham Hughes is a person who knows about APS. Why not read some litterature written by him. I have read a lot about APS even if it is not written in my language. Having a bad memory I have to read it again.

    Some doctors do not want to admit they do not know .... and it can be exstremely difficult if several doctors (you have got 3 and no one is responsible for you) ) who do not know, works together with a patient.

    That is why we must have a Specialist who knows what to look for and who can refer to other specialists if necessary.

    That is what I have learnt during 13 years and also been working with doctors when the kids were small for some years.


  • I've read an article written by him so far. I will continue to search for more by him.

  • remind me to never go to that rheumy ever. strokes affect every aspect of a persons body blood clots can happen anywhere in the body. your doc should not be a doc he insulted you time to find a new rheumatologist

  • My neurologist says the same thing. That it's attacking my central nervous system. Based on what everyone describes on this and the other forums I'm on, my symptoms are the same as others, but different too.

  • Hi,

    I recently bought a book recommended on here to just clarify any misunderstandings I had about APS. From what I understand, it's a sticky blood disorder that can affect anywhere in the body. I had mini strokes and my symptoms of those and my normal APS symptoms consist of fuzziness with thinking and memory but that's due to the blood, not having any issues with my brain. The blood thinners help with this.

    My Rhumy isn't my APS specialist - do you see someone else for your APS?

  • I see a neurologist due to the neurological symptoms and brain lesions. And coumadin clinic through a hematologist.

    There is a specialists in APS about 80miles away. I plan to contact her at some point to ask questions.

  • I really do suggest you see somebody else in addition, it is simply that some doctors have half the picture but really do not understand the disease in full detail, it is important that the dots are joined, Hughes Syndrome/APS can affect any part of the body and needs careful monitoring, alongside a helpful diagnosis.


  • Hi I have Hughes syndrome which effects my brain, I think it used to be called sneddons syndrome.

    I had lots of neurological problems, epilepsy, balance problems loss of feeling hands, balance was awful was beginning to fall at least once a week

    I was put on hydroxichloroquine which improved my symptoms in less than a week, still not brilliant with memory

    In the past I had a DVT, heart attack caused by clot

    I also have Warfarin, range about 3.5

  • I have problems with the brain (lacunae infarct, TIAs, aneurysm, white matter, etc) but symptoms are widespread. I guess anywhere blood reaches can be affected. I don't think your docs should preclude checking the rest of you out just because SO FAR its all been focused on the brain! Keep an open mind x

  • I've had heart test and X-rays of my lungs, in addition to the multiple MRIs I've had. Is there other test to check for clots in other organs?

  • I don't know, I haven't had heart and lungs checked out! Only MRIs brain and spine. I'm guessing as this is the NHS, they only check when you are symptomatic!

  • The hematologist who first diagnosed me, and this was back in 2001, explained that the APS antibodies can go after a certain phospholipids found in platelets. This results in veinous strokes such as DVT's and PEs. But some APS antibodies, such as the ones I have, are very talented and can also identify and attack lipids found on capillary walls. These antibodies can also cause mini strokes and neurological problems because the clot sites are often in the brain and the spine. For this reason the hematologist suggested that my target INR should be between 2.5 and 3.5, whereas those with the less talented antibodies are asymptomatic between 2 and 3.

    I'm certainly not a hematologist, and this was told to me 15 years ago. I'm sure the understanding of APS biochemistry has improved since then. But maybe what the rheumatologist told you has some relation to the explanation I received all those years ago.

    Or not. I do echo suggestions that you go for another opinion.

  • What your hemo told you is basically how my rheumy explained how APS is affecting me. That it's affecting my arteries not my veins.

    I'm going to search for articles and info written by prof. Hughes in addition to trying to see the nearest APS specialist.

  • Prof Hughes is in his book "Hughes Syndrome, A patient´s guide" writing on page 28:

    "The fact that Hughes´syndrome patients can and do develop arterial as well as vein thrombosis, is of immense clinical importance.".


  • Thanks. I am also going to seek out his book.

  • I found this on the internet:

    "Guidelines on the investigation and management of antiphospholipid syndrome" Look under "Definitions".

    Hope you find it. From 2012


  • Thanks everyone. I will take your advise and seek out a doc that is knowledgeable about APS to see if she disagrees with my other docs regarding how APS is affecting me. 😊

  • Hi there, GinaD has explained it here how Professor Beverley Hunt also explained it yesterday at the HSF patients day. APS can affect any part of the body, but that doesn't mean that it will affect all parts of your body. Some people, for example, only have problems during pregnancy. This is called obstetric APS. By the same reasoning, some people are affected by venous clots (DVT/PE - such as myself) and others are affected by arterial clots (stroke/heart attack/TIA - such as many others on this forum). Those with brain and neurological symptoms are often given a higher target INR of 3-4 than those who have venous problems - these patients are often given a target range of 2-3.

  • Thanks Merrohawk, you've given me hope! I've been struggling to get my local haematologist to raise my INR (range 2-3; never got above 2.5). I've had TIAs since starting Warfarin this year, have white matter and a lacunar infarct, loads of cognitive issues and an aneurysm. I have a first appointment with Prof Hunt in July so maybe she'll advise a higher INR 😊

  • Mine INR is between 3-3.5

  • Jealous! Lol!

  • You definitely need to make sure your range of inr is higher I was discharged from rheumatology as my APS is neurological rather than thrombotic. I'm under a neurologist and hes arranging a pet scan as they show the more smaller veins in the brain. The smaller veins apparently are more susceptible to APS I.e placenta's and brains,hope this helps,tho I agree you need to speak with more professionals. I questioned sneddons with myself,I am certain I have it but its not classed as a separate illness now,its just APS. Xx

  • Thanks. There is so much people know about this ands so much people don't know. Including doctored. I've already inquired about my INR rang being a little higher. Right now it's 3 - 3.5. it was raised to that from 2 - 3. I'm going to see how it goes for a while and go from there.

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