Hello I'm new here and you all seem to try your best to help with questions so I thought I'd go ahead and post to see if anyone can help me.
I don't want to write an essay so will give brief info on what's been happening but happy for any questions to help clarify the info
The problems that have been occurring started a year ago (although I now realise that I have had some strange symptoms over a few years) it started with a dull headache on the top of my head that wouldn’t go away following a flu-type bug in March. As well as the headache I was experiencing an extreme fatigue, some intermittent pins and needles and clumsiness and balance problems. I was referred to neurology and over this year I have had 2 MRIs, Visual Evoked Potential (VEP) test and a Lumbar Puncture (LP) with blood tests at the same time and have seen the neurologist 3 times. As well as the above symptoms I developed a problem with blurred vision and sight deterioration in one eye, pain in the eye and worsening headaches and scalp pain, worsening of pins and needles in legs, feet and arms and pain and weakness in my legs - VEP was positive suggesting optic neuritis, MRI shows lesions in brain and spine. Neuro had discussed MS with me and I had been expecting a diagnosis. At my last appt with him 4 weeks ago my LP results weren't back so he told me he would write with results and see me in 6 months after a further MRI, also said that I 'might' have 'mild MS'
So, my reason for being here .... in the neuro letter he advised that 'blood tests show there were anticardiolipin antibodies at a level of 69 which may indicate APS but will need a further blood test in 12 weeks to see if these are still present and will discuss APS further if this is the case". So I made the mistake of looking up APS and to be honest as well as being completely freaked out and scared about this have also realised my symptoms could fit. However it feels like a further long wait until I can have the next blood test and I'm wondering whether it would hurt to start taking an Aspirin and if I did whether it would affect the results of my next blood test?
Sorry it has turned into an essay after all. Thank you for reading and any advice or thoughts greatly received
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Mand25
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HI and welcome, quite a few people with MS turn out to have Hughes Syndrome/APS, thank goodness they thought to test you for it. I enclose our charity website here, ghic.world/ which is full of information, under the Hughes Syndrome section are 'main tests' make sure all three were done.
Please do not be frightened, it is far better to be treated than not so, your GP and specialist may also find the website useful if the jury is out on your diagnosis. Do write out your medical history in bullet points, and symptoms in bullet points and any reference to relatives past or present with autoimmune disease including Thyroid, it will help you at any appointment you attend.
On top of the tests mentioned above, it is also advisable to test your Thyroid, vitamin D, B12 Folate and Ferritin as it can make things very much worse if additional things are not picked up on. Taking an Aspirin will not affect your blood tests, although hopefully your next appointment is soon, with your GP.
A lot of the time Thyroid testing is poor, so a lot of us order our own, I will link you testing options if you want them.
Also the charity website contains a list of specialists across the world, and our forum here does have some under 'pinned posts' over on the right hand side.
As MaryF says you should not be afraid as the worst thing that could happen with this illness is to go undiagnosed and untreated for a long time.
Probably you get the second bloodtest positive also and then you have to find a Specialist of autoimmun illnesses who understands our illness well. That is exstremely important to get a quick and correct result to your problem.
I am 75 in June, live in Sweden and when I was finally properly anticoagulated with Specialists around me I could rest and feel rather good. "Sticky Blood Explained" by Kay Thackray is a good book to understand this rather new and rare illness. Also good for relatives to read as she has got APS herself.
Thank you all so much for your prompt replies and positive words. Having looked at the levels for blood results 69 seems to be high in the range so I am expecting the second test to be positive as well. I suppose what I feel freaked out and scared about is waiting for the second test when a clot could occur at any time hence the question about Aspirin. It seems strange that it can thin the blood and yet wouldn't have an effect on the antibodies - Do the anti bodies remain in the blood even when you are treated?
I am also interested in the thyroid issue, I've been convinced that I have an underactive thyroid for years but blood tests have always shown TSH just within range, I have nodules on my thyroid which were scanned with ultrasound and are benign, also have 3 female relatives with thyroid problems. I have low folate and B12 which have been treated and ferratin that was low but in range last time it was checked - neuro has now asked GP to treat this to try and help Restless Legs - GP has said no to testing Vit D so far - I have an appt with him in 2 weeks (soonest I could get) following the neuro letter so I will press him again on this. I would be interested in trying to get the thyroid tests myself so would appreciate the links please Mary
A lot of us order this particular test at the moment, some Thursdays it reduces in price to £75. medichecks.com/thyroid-func... A lot of us take Aspirin prior to diagnosis, but please do consult with your GP. MaryF
Firstly , where do you live? What is your age? I ask because I’d like to address a few of your questions that haven’t been addressed yet.
Firstly, as you know, we are not doctors, so we cannot give medical advice, so I would check with your doctor first about aspirin.
However, absolutely if he/ she gives the go ahead ( in other words you do not have any kind of ulcers, or gastric disorders , etc...) I would think it beneficial to take a jr strength ( baby) Aspirin with food once daily.
Yo answer another question, no. It will not affect any APS testings that will be run in any way. ( you may read on here that warfarin can affect the ability of the Lupus Anticogulant test, one of three of the tests. )
Again, aspirin will not affect any of them.
Note- jr aspirin is approximately 10 mg stronger in the USA ( 81mg) than it is in the UK. ( 70mg I think?)
I can tell you that I have had persistant exstremely high titres of my Cardiolipin- and Beta-2-Glycoprotein 1-antibodies all the time since 2002 and they have not changed after i have had Warfarin and I feel ok now. In Sweden we should have below 10 but i have over 160. No correlation with your 69 what I can understand. Different methods to compare in different countries I guess.
So I think you should not be afraid of the titres as we are very different persons with our APS. Some of us are negative for the antibodies but still have severe symptoms of APS and some members have antibodies that tend to go from negative to positive and viceversa.
You have come to the best site for advice and support. Not understanding and the unsurity of it all , not knowing and trying to get the best doctors are probably the hardest thing. You are doing really well, knowing and going in the right direction is most important. You symptoms are almost a mirror to mine. I was 33 yrs old I think, I first noticed through my vision disruption. Heavy legs pins and pins and needles, numbness many other symptoms, many symptoms I lived with I thought it was the norm.
I was diagnosed with SLE (Lupus) most of my major organs were being effected then diagnosed with APS. Still lived quite a normal life once the vision was sorted. For few years. Did have episodes of joint pain problems lasted few years and now gone. I was told everything is treatable. Years later when I was 58 MS reared it’s head only to be re diagnosed as APS.
I still lead a normal life now 60. I do have Mitral Valve Problems. Specialists keep me on aspirin as I haven’t had a major clot. I take blood pressure tablet and Vit B I and will probably be having an operation for the mitral valve in the next few years as advised by the specialist. Perhaps you should keep check on your heart too.
My suggestion is to
Eat healthy stay as fit as you can keep a record of symptoms, get the best doctors - learn from this clever group. Be positive and keep smiling.
I realize that your diagosis has not been finalized. Reason? ANtibodies go up and down throughout our life as our immune system responds to this or that stray mold or virus. Therefore antibody levels go up and down. A lot. But assuming a diagnosis of APS is made then : don't freak out. The disease is imminently managable -- as opposed to MS. When I was diagnosed I did give up sports that increased the chance of a dangerous fall: no more attempts to ski. No more white water raafting (though I still kayak occasionally on mild to semi-mild rivers.) I still hike and walk. A lot. And swim. and bike (no more mountain biking.)
Getting the diagnosis is half the journey. From there it is important to have a doctor with APS experience to help the patient find the best anticoagulant or antiplatelet match.
First, if your "MS" symptoms are caused by APS, the good news is that this is very treatable! In fact, a large percentage of people who are given a diagnosis of MS, have APS/Hughes.
It is understandable to be anxious. This is normal.
If I were you, bearing in mind I am not a medical doctor, I would go to your GP and ask whether there are any reasons why you should not take 75mgs aspirin each day ie baby aspirin. You can then monitor, over time, whether this mild blood thinner makes any difference. I take 75mgs twice a day because it was insufficient, even with Plaquenil, whose side-effect includes a mild blood thinner.
The aspirin may not make a great difference, if your blood is very "sticky" and if you do have APS/Hughes, you might need a better blood thinner. However, if it does make a difference, this may be significant, provided there are no medical contraindications. Never take anything without your doctor's knowledge.
Unfortunately, some doctors treat the disease rather than the patient. The problem with blood tests is that can and do vary. Some doctors will only prescribe and diagnose on the basis of blood tests.
Thank you all for your support and reassurance you really are so kind. I find now after messages from you all and from doing some research of my own that I'm actually hoping that my symptoms are down to APS rather than MS because its treatable. Still a way to go yet but I'll let you know how it goes.
Hello again, I hope you don't mind me coming back with more questions. I finally have an appt with my GP this week and am wondering if there is anything I should be asking him to do whilst I am waiting for the second anticardiolipin antibodies test? I feel as though I have been going back and forth to doctors for many years now with a variety of symptoms that have never really had an explanation or a proper diagnosis so I want to make sure that I'm prepared. A couple of things have sprung to mind -
Around 5 years ago I found quite a large lump in the front of my neck and this was diagnosed by ultrasound as a multi-nodular goitre on my thyroid , I had a further scan 6 months later to check there was no change in its size, there wasn't and there was no further plan for follow up. Over the past 3-4 months I have been having some problems swallowing when I'm eating and think it may be something to do with this goitre. Having looked around this site I think that thyroid problems and APS often occur together. Is this correct? And if so should I be asking for anything other than blood tests?
Additionally, I was wondering if the GP can do any other blood tests to check for 'sticky blood'? Can a normal blood test check the viscosity? or if there is any evidence of previous blood clots?
I also forgot to mention that I was told at least 10 years ago by my optician (and at every eye test since) that I have 'dry eyes' and have been treating this with Gel Tears and Hypermellose ever since. I wasn't ever given a reason for this and no other tests or referrals were offered. My eyes have been more problematic for around 6 months, I have blurred vision and pain in my left eye and both eyes feel much more uncomfortable and dry. There is a suspicion by the neurologist that I have had Optic Neuritis as the Visual Evoked Potential test in September was abnormal. Does APS cause problems with dry eyes and sight?
As to your eyeproblems you should see an Ophtamologist.
Also in May you will know if you have positive antibodies twice. Dry eyes can mean Sjögrens but other things may give dry eyes like age or drugs etc. Your blurred vision can mean APS as when the blood is very sticky we may get small tiny embolies (some of us get TIAs) and that can be helped with a proper anticoagulation.
The absolutely most important thing for us is to get to a Specialist who knows these autoimmun illnesses. Many of us have had to fight for our life to get to this person as it may be difficult. Warfarin was my lifesaver.
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