Hi, after a recent brain MRI for lots of symptoms of unsteadiness and aches and pains here and there i have 13 lesions on show.
My brother and father have the same symptoms and my father has an ms diagnosis as did my grandfather and great grandfather.
The neurologist thought that was what may be effecting me until he did some blood tests and the first has come back posistive for lupus anticoagulants and has told me to go away and read about it while I await my second blood test which is what has brought me here.
Just wanted to say hello and could do so with a little bit more info as I'm a bit lost with it all
Louise xxx
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Louise1234
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Hi and welcome, it is not unusual for an MS diagnosis on the way towards getting a diagnosis for Hughes Syndrome/APS, and perhaps that was the case with your relatives. Great to hear that your neurologist is investigating, Are they doing just the one test as there are three!
Anticardiolipin Antibodies (aCL)
Test
Sometimes referred to as Antiphospholipid
Positive in 80% of cases
Higher Levels = Higher risk of Thrombosis
Lupus Anticoagulant (LA) **
Test
Positive in 30-40% of cases
Cannot be used if patient is on warfarin
Beta2GP1
Test
This is a newer test, not routinely performed, but occasionally positive when the above two tests are negative
Let us know how you get on, and you will learn a lot from others by being on this forum, as we all have had a different path to diagnosis. MaryF
Hi Thankyou for your reply, I had lots of bloods done at my last appointment and had a spinal MRI which is clear, he said that I was positive for lupus anticoagulants and I'm having a repeat blood test next week to confirm, if it comes back negative then I'm to have a lumber puncture, I am 41 and he is concerned at my symptoms and lesions and that all members of the family are effected by balance symptoms through many generations that all seem to get differing diagnosis but same symptoms. I am the only one so far with changes on a brain MRI xxxx
As MaryF already has told you this illness runs in families and MS and HS/APS are sometimes mixed up by the Neurologists.
It is good that you have got an investigation from your Neurologist who has taken those bloodtests even if he thinks it is MS as we have found here that the Neurologists usually do not "get" what HS/APS is about - too thick blood that has to be properly thinned to avoid clots, PEs, DVTs and strokes and heart-issues and a lot of other symptoms.
I think you should look for a Rheumatologist specialilzed in autoimmun illnesses like HS/APS. It is important it is a Specialist! Some Hematologists are also specialized in HS/APS as it is also a blood-disorder. I do not know where you live but there are very few Doctors who know about this illness so I hope it will not be very difficult for you to find your Doctor.
Good Luck and let us hear how it goes for you. Hope you will stay with us as our members are very helpful and knowledgable.
There is a good book about this illness that many members here have read (me also). The book is not quite new with the latest drugs in it but Kay has APS and writes about the different symptoms and how it is to live with this illness. It is written by Kay Thackray and the name is "Sticky Blood Explained". I suggest you get it. I have it in pocket here in Sweden.
Thankyou for your great reply, I will see where the neurologist refers me too as he is incredibaly good and knowledgable he may deal with it himself or refer me on, it's all very new and I just trying to understand it, I'm now panicking and feel Like I'm now living with a bit of a ticking time bomb of what could go wrong xxx
Sorry to hear you panicking. I understand that but you are now in good hands. You have a caring Doctor at present.
Some people go years with this "ticking bomb" and do not get a good Doctor who can help. See to it that you get a Specialist who is specialized in autoimmun illnesses. That is what is most important; to have the help of a competent Doctor.
I had a lot of balance issues like Vertigo (had to hold on a tree not to fall to the left) saw double for some minutes ,lost the vision on my right eye for some minutes, sudden severe pain for some seconds or minutes, difficulties to walk straight etc etc.
I started with baby-Aspirin and it helped (but not quite) for a couple of years ( I had and still have all three antibodies incl LA in high titres all the time) but after an op for hyperparatyroidosis I was worse and had to start Warfarin. When i stay at a steady and rather high INR (around 4.0) I do not have symptoms.
Just one quick question if I start to take a low dose of aspirin now will that effect my blood test next week for lupus coagulant I'm off to the pharmacy to buy some aspirin don't feel like waiting to be prescribed when I can just buy some xxx
Not a doctor, but I would say no it won't. I had several LA tests and all were done while I was on anti-platelets, in my case clopidogrel, but aspirin is similar in action.
Hi, I have learnt it is only Warfarin you should not take when doing the LA test. I did the test several times when on Aspirin but after Warfarin I have not taken the Lupus Anticoagulant-tests.
It came as a shock to me back in 2001 when an MRI showed that what I have been calling "panic attacks" and migraine headaches had actually been mini strokes. My brain scan showed dozens of lesions.
And I too was very freaked out when I looked at that scan. But I got my diagnosis. Started on warfarin. And when the MRI was repeated a year later it showed only one remaining lesion.
Hi where r u from! I live in USA! I've had this disease my whole life! Like Kerstin says Neurologists usually don't get this disease! After loosing my leg to an arterial blood clot in my heart, My Hemotologist diagnosed me 9 months after loss of leg! I had been under his care for another rare blood disease for 13 years! I went to a Neurologist and was told I had a virus running thru my body!!! A month later had my diagnosis! Not glad I have it, but glad I know wat it is! For years I'd tell people there's something wrong and one day it'll be to lat! What I do b4 I go to any doctor is call first and ask if they know of the disease! Most say no here in USA! I do have a Rheumatologist and Hemotologist that takes care of me! Just remember what Kerstin said, we with this need out blood thinned and must be at levels between. 3-4 for us to feeel better! The Warfarin never worked for me! I'm on Lovenox shots everyday now! This is a complex disease and I too was diagnosed with MS wen I was 36, but never believed them! Good Luck and keep calm! You seem to be in good hand and let us know how u do!!! GODSPEED
Thankyou for your reply, I am very lucky to have a brilliant neurologist here in the U.K. He is dealing with my brother and I and is testing our genetics as for the last 4 generations everyone has problems with balance and ms symptoms, he is really pulling out the stops to test us for everything to get answers xxx
I have balance problems as well. After having balance and dizziness problems (and my clinician noticing I had a habit of leaning on things and tilting my head) I was evaluated by Computerized Dynamic Posturography.
In my case, what I was seeing was not processed "normally" when it was delivered to the brain. Working with a physical therapist greatly improved my balance problems. You can read about the evaluation I had here: nationaldizzyandbalancecent... )
I thought you may find this article interesting:
Migraine, memory loss, and “multiple sclerosis ”. Neurological features of the antiphospholipid (Hughes’) syndrome
Not to overwhelm you with links but this is the one I have found most useful (after spending hours online) If you hover over "About APS" you'll see a lot of info - just click on whatever sparks your interest and it will go into further detail. Ie, if you look at "What are the Symptoms" and click on "ears" as well as "brain" it will give you info about how balance issues are related to APS
Aspirin ( anti platelet ) will not affect any of the three tests you will run. Only warfarin will affect the lupus anticoagulant test. You might start with just 1/2 strength with food as to avoid upsetting your gastric lining. Even better might be two enteric coated jr strength aspirin.
Doctors usually prescribe junior strength if a patient tests positive, but is asymptotic. ( but you are having symptoms, so I think if it were me I might take take two jr strength enteric coated aspirin.)
If you have any problems with heart burn or gastric ulcers, bleeds, etc, of course this advise would be unwise, and you should consult your gp first.
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New APS Diagnosis 
New and worried
very worried,any help appreciated
New INR machine...
New to APS and worried
