Sticky Blood-Hughes Syndrome Support
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APS and White Matter in Brain & Dizzines

Have any of you had an MRI and been told you have a lot of WHITE MATTER in your brain, from the damage caused by APS I have had APS and vascular brain disease, (Among other things) diagnosed since the early 90's and am on life long Warfarin and Aspirin, however it seems for almost 2 years, since an awful DAY on 1st Dec 2011 when I awoke so dizzy ... and spent months not able to lay on the back of my head or the right side of my face, that I have never ever fully recovered, My INR Range is 3-4 my specialist Hematologist is brilliant and I have had a recent MRI but they are all very worried, as it does show a lot of WHITE MATTER it has been suggested it may be small vessel disease, MS or another similar thing, however I have heard that APS suffers are often told they have MS, I am scared of the dizzy feels, not feeling totally awake etc, and wonder HAS ANYONE ELSE OUT THERE had anything at all like this X

17 Replies

Hi there and welcome to this site. It isn't unusual for people to be told they have MS as scans can look very similar as they do with both diseases which can make dx difficult for some. Where are you situated as it seems to me you need a good APS specialist to treat you. if you are in the uk then we have a list of specialists that you can find on the list over to the right of the page under "Browse by Category".


Hi Yes I was aware that we can often get told we have MS but the amount of white matter I have is a worry to me, and my Hamotologist and I am waiting for neurologist to look at MRI he wants me to have MS tests, but has yet to see MRI my local hospital had not sent it to them when I went to another neurologist in another area. I was diagnosed in 1992 in 1997 St T's did MRI that showed multiple infarcts and vascular disease in the brain, BUT the amount of white matter is a real worry, I know it may be life threatening in my case. I haven't been right for 2 years in Dec since the dizzy turn I had, I am already a member and think this site is amazing, I actually got my specialist off your list. x


Upon my diagnosis I had gobs of that -- my MRIs looked like my brain had dozens of spider webs. I went on warfarin, I slowly returned to normal activity levels , and I tried to take advantage of my recovery time by reading a lot.

A year later my neurologist - literally- came dancing into the exam room for my follow-up carrying the MRI from earlier that week. All but one of the spider webs were gone and that one was much diminished.

He attributed my dramatic recovery to keeping my brain active, eating a nutritious diet and sleeping the requisite 8 hours ( as well as the warfarin.)

So try not to panic. My neurologist did explain to me on that happy day that many docs are skeptical that the brain can recover from the amount of damage my earlier MRIs had revealed. But he had found the brain to be remarkably plastic, especially in folks who enjoy puzzles and deep thought.


So, a thought -- I'm sure you're nervous. I sure was after seeing those scary initial MRIs!

Take that nervous nervous energy and try to channel it into . . . learning a knew language? Going one subject farther into mathematics? Actually reading one of those deep classics? (for me it was Adam Smith's "Wealth of Nations." Lots of people who quote him have never read him so there is this huge MIS consensus about the context of his quotes.)

Good luck, and follow your doc's suggestions. But remember my experience and try to channel the panic.


I have been diagnosed with white matter, nerve damage and small vessel disease, caused by Hughes. Although not reversable the hope is to prevent further damage.

I suffer from dizzy spells and I have cognitive function issues which have been getting worse. My Neurologist is sending me for another MRI to compare. I can't have lumbar puncture to establish MS because I am on daily Clexane injections.

I am fortunate to also see MK at St Ts'. He was the first to take my illness seriously and give me a proper diagnosis. I could possibly owe him my life.

I hope you get the answers you need. You are welcome to P M me if you want to chat or more info.

Take care


Will PM you later I think it sounds like you and I are very similar many thanks Diana x


Gina thank you for your comments I appreciate them, I think you and I have something different going on, as my brain issues are not like spiders webs and being on Warfarin and Aspirin has not stopped me getting worse, But I appreciate what you have said, and I do try to keep my brain very active.


Hi Cherrydi,

I think what Gina said is right on the mark. I have had so much white matter in my brain and for awhile they thought I had MS; that was about 8 years ago now. While it is still there, they no longer tell me it looks like ms, but rather the accumulation of all the tia's and the stroke suffered.

Ok, so all that happened. I do get memory blocks, etc., and also realize some of that is from medication. So, what can I do? I eat well, take naps, get plenty of sleep at night, exercise my brain (whatever can do to stimulate and keep the growth up!), oh, and I think positive thinking helps a whole lot.

I still have a tremor in one hand and I forget more easily. It takes me longer to 'gather my thoughts'. But, I think I'm doing ok overall, considering.

Good luck!!



Thanks Leigha I too get memory blocks and all sorts of things like that, I think mine is all the Strokes and TIA's do you do anything specific to try to help it, like Gina has said, what meds are you on to help it:? Take care and I do understand.


I can't take warfarin because of low factor viii levels (I bleed more easily), so I take an alternative called nattokinase. It has helped me for the almost 6 years since being diagnosed.

Also, I have a seizure disorder, so take both tegretol and topamax for that and they also help with migraine. Side effects are memory loss. (I'm in the States, so names of drugs are different here.)

Don't think my answer is helping you! - but we are each unique in this. Memory blocks are a part of Hughes for so many of us, but can be worked with to a great extent if we keep at it!

All the best,



I understand what you are saying we are all different, but we often suffer similar issues like memory issues etc, I feel for you and hope you get on well with your meds and that they help you. x


I waas tested for MS result was negitive but was diagnosed with Snedddon Syndrome - cerebalvascular disease and APS.


Hi I have not heard of Snedddon Syndrome I will look it up


Hi there, I am interested in your being diagnosed with Sneddons Syndrome. How did they arrive at

that diagnosis? I have Hughes, Sjogrens and small vessel disease in the Brain. Cognitive impairment

is unfortunately part of everyday life for me as I am sure it is for thousands of other sufferers. I am

however concerned that if the Cerebral Hughes is progressive, this in fact is Sneddons Syndrome.

I would appreciate your comments and thoughts on that.

Best wishes



Like you I have Hughes and SLE and small vessel disease and cerebral vascular disease, I too had not heard of Sneddons Syndrome, but the thing that confuses many of us, is all too often we get told we have MS or other similar things as our brains and our symptoms can be similar, it really does take an expert to find out what we do and don't have, as we often have more than one thing going on at once. I feel for you, as I too am concerned that it is progressive, I am still waiting to find out what a neurologist thinks of my latest MRI scan. It shows white matter, in certain places, that apparently may also be MS but I am not convinced. How does your conditions effect you, are you giddy or feel like you aren't really awake totally like semi-conscious what meds are you on? I have got worse in the past two years for certain. All the best Diana



I have recently had an MRI scan and looked a little into the results I have been sent.

But White matter is part of the brain, we all have white matter it is under the grey matter. It's all accorded what is showing on or in the white matter that has a bearing

on your diagnosis.

All the he best


Hi Shutup,

I will not shut up but ask you if you have been to an APS-doctor. I have APS and had carpaltunnelsyndrom before I was well anticoagulated.

You also have symptoms for APS and symptoms from your heart.

With APS we often have miniclots that are too tiny and not seen on an MRI. I have always have clear MRIs as i can remember. Neurologists do not "get" what APS is about - too thick blood that need to be well anticoagulated.

Ask you GP or Neurologist to take antibodies for APS if not already done.

Look at

Kerstin in Stockholm

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