confusion about diagnosis

[47ginger]

my blood work indicated aps. i had a stroke and tia. i'm on warfarin. neither the hemotologist nor the neurologist seem to want to say for certain that i have the diagnosis. am i imagining things or is there a general reluctance among doctors to make this diagnosis? what it has meant for me is that i've had to piece together solutions during a particularly difficult period of loss of balance, confusion and memory problems, all the while wondering if it is all in my head. i would appreciate thoughts and experiences about these questions. thank you so much.

[GinaD]

i’m at a hotel so I’m not sure why my response has not shown up. Forgive me if I am duplicating.

My pre diagnostic symptoms sounded very similar to yours. I had been having, what I called panic attacks, but werelater diagnosed as mini strokes. I eventually tested positive, but the symptoms came before all three blood markers were positive. My whole life changed when I discovered quite by accident that I am gluten sensitive – if not an outright celiac. Since going gluten-free all my blood work has returned to one hematologist called boring. I like boring bloodwork. I remain on warfarin, just in case but since going gluten-free 20 years ago I have more energy at age 69 that I had at age 29. You might research and try an elimination diet wherein one eliminates a possible allergen from food for a couple of weeks. When that period is over and the food is reintroduced, then if you allergic to that food you will know immediately by your body’s reaction. You should not try this on your own, but under supervision of the doctor or a dietitian. Good luck!

[Jumper99 in reply to GinaD]

May I just add that you don’t need all 3 blood tests to be positive, just 1 is enough. But you sound like you are what’s known as triple positive. But how interesting that gluten free has had such a great effect. I’ve tried before but never managed to stay with it but perhaps I should try again. Thank you for posting.

[Willow7733]

Hi. I had the same feeling of being in limbo. None of my specialists wanted to say if I had it or not at the beginning. I have had over 12 pulmonary embolisms in the past four years. All blood thinners have failed me more than once. The most I would get from my hematologist or pulmonologist or interventional radiologist was: it's bad luck. What do I fi with that? So I asked that very question one follow up appointment and all I got for an answer was: this is your life now - live with it.

I am sorry you are going through this and I know putting a name on what you are going through is an important thing. I have been there - because it does mess with your mind! I thought I was going crazy at times.

I hope you get a diagnosis soon. Sorry if I am not much help to you either. Just know you are not crazy and you are not alone.

[47ginger in reply to Willow7733]

thank you so much. your reply was very helpful. sometimes i feel foolish for even needing to hear someone name it out loud to me. but naming it IS important-you can't fight back against something you can't identify. the only useful insight i've had is that whether or not anyone ever names it, the healthiest thing i can do for myself is to act as if i did have it. that is, good diet, exercise, rest and adherence to medication schedule. so far i've had much better luck with the medication then you have. i was on eliquis until i had another tia, and i've been on warfarin successfully for the past year. i am sorry that you have not been as fortunate. i wish you the very best going forward. thank you again for the thoughtful reply.

[Willow7733 in reply to 47ginger]

That is exactly what I kept thinking - how do you treat "bad luck"? How do you fight it? It made no sense to me. If they did not know what it was, just say you don't know! Calling it bad luck was like a slap in the face to me. I was so angry. And when I had another pulmonary embolism, and they called me at work saying this is my life I have to live with it (and the only way to treat it is just continue with the blood thinner that had failed me twice( I lost it. I. So embarrassed that I cried at work, but I was so angry and frustrated. I too am sorry you are going through this. Being in limbo is the worst. A healthy diet, exercise, and taking the medications are the only way we ourselves can take some form of control over what is happening. At least I felt I was doing something about it.

[47ginger in reply to Willow7733]

"bad luck"??? i hope your doctors are exceptional in other areas as they have definitely not scored in the empathy department! i am grateful to finally have spoken with other people with the disorder. it is so nice to have the validation. thank you again and best wishes going forward.

[Ray46]

Some doctors are reluctant to label, in general. If it helps I was once party to an illuminating conversation between medical professionals on exactly this subject (completely different area of medicine), something like:

[discussion on more tests to get to a diagnosis]

"but what difference will having a label make?"

"if it changes the management guidelines then potentially all the difference"

[eventual outcome: yes it did, and yes it did]

This is the key thing - if you got a diagnosis what would change about your treatment and management (see e.g. ard.bmj.com/content/78/10/1296 ) ? If the answer is "nothing" then what would you gain?

There are actually (medically, leaving out insurance) potential downsides to getting a diagnosis. APS doesn't have a cure, treatment is in effect just management of symptoms, so you gain little from the signposting. What you may lose is full investigation of other conditions that may still be on the doctor's differential list, things which might have a cure - effectively once they settle on APS they stop looking for other problems that just might be the cause of some of your symptoms, and just might have other treatments available.

I actually have an APS and hypothyroid diagnoses (from years ago, not sure I'd get APS now as criteria have changed), and those two cover just about any symptom, so I find it is now very hard to get doctors to listen to any symptoms even if they are new, seem to be progressing, and I am concerned they may be something else. The easy path for my doctors is now "of course you have a load of symptoms and feel really unwell, you've got APS, see you in another year".

[47ginger in reply to Ray46]

Thank you for the interesting perspective. I've worked hard to adopt the strategy of which you wrote-that if knowing the dx does nothing to change the treatment and management of the disorder than there is nothing to gain by knowing. To that end I have made the lifestyle changes that one would make to feel better with any condition-that is, diet, exercise and proper rest. I truly appreciate the pragmatics of your thesis. Where I am having difficulty is that the symptoms of APS that are visible to others-forgetfulness, fatigue and balance problems-are all things that friends, family members and employers need to understand as part of a disorder rather than say indications of not caring, not listening, clumsiness or laziness. It would be so helpful to be able to say with confidence, "I have this disorder, and this is what you might see, and this is what you can do to assist me when I'm struggling." And to be perfectly honest, it would also help me to forgive these deficits in myself.

Thank you so much for your response. It helped me clarify my thinking about this tremendously.

[Ray46 in reply to 47ginger]

One diagnosis you do have confirmed is stroke. Same here (mine technically TIA although some doctors disagree on classification). Fatigue, memory, coordination issues can all be (post) stroke. My starting point for explaining "me" to others is always "stroke".

Most people understand something about stroke, and for those that don't you are very unlikely to get anywhere by using "anti-phospholipid syndrome" instead. For those that want more detail you can get into "what caused the stroke" and then APS, in my case that is an actual diagnosis but there was disagreement between doctors and looking at more recent guidelines I am not sure I would get confirmed diagnosis now (difference between provoked and unprovoked and fact that my BP was a medical emergency in itself). You can still say "they think it might be APS that caused it".

Now, fatigue, memory, coordination issues can also be APS symptoms without stroke, microclots are one theory, in my case I am sceptical because higher INRs show no consistent improvement (you may find otherwise, worth tracking it). Could also be other things too, but in the end does it matter? The aim is to get people to understand and accommodate you, I find "stroke" is usually enough for that.

Finally don't forget the effects of medication, particularly as the number of meds start to stack up and you have potential poly-pharmacy interaction issues as well. Brain fog, fatigue and chronic pain are all reported side effects of warfarin, but unfortunately unlike most other drugs, we can't just stop it for a while to test if it's side effects. Doesn't take much searching to find the stories of people who were only on it for a short time or could switch to something else and found that Brain fog, fatigue and pain went away when they did. I was on anti-platelets only for many months after stroke while doctors debated diagnosis, I have never felt well since switched to warfarin, when I look back to the last time I felt good, it is "before warfarin" not "before stroke".

In fact "warfarin" is the other thing I tend to tell people along with "stroke". A lot of people have heard of it, and there are a lot of people you actually need to tell (any healthcare providers, employers may need to do specific risk assessments for you, massage or fitness training any sporting activities etc. etc.).

[47ginger in reply to Ray46]

"The aim is to get people to understand and accommodate you, I find "stroke" is usually enough for that.". Brilliant! That is a very useful suggestion-many thanks.

[Jumper99]

I think it’s really important to have a diagnosis, and I can see no reason why they won’t diagnose as your blood tests are positive and you have evidence of clotting. So you fit the NHS definition of APS. Not only would it make you feel more certain that you are on the correct treatment, and importantly that no one would take you off warfarin, but it would mean that you as well as your family & friends would know that you are not making up or exaggerating your symptoms. You would learn to trust yourself more in managing the symptoms, if that makes sense. Equally, if you are taken to hospital as an emergency (which I hope is not needed!) then a diagnosis would make things easier for the doctors as they would know what could be wrong. Other people like dentists for example, need to know too.

There does seem to be a reluctance to diagnose autoimmune diseases, that’s just my personal opinion, but it’s happening with lupus too. I’m not sure why. But copy the NHS page for APS and as you fit the criteria ask your doctors why they are refusing to give you a diagnosis. The haematologist should be the one who knows about this as it’s a blood disease. Sometimes rheumatologists get involved because that’s where it was first discovered as a separate illness to lupus.

Or if that doesn’t get you anywhere and if you can afford it then it might be worth trying to find a knowledgeable private consultant.

[47ginger in reply to Jumper99]

Thank you for your excellent summary. And you hit the nail right on the head-the part about trusting myself in recognizing symptoms. It's embarrassing to admit, but I've missed a stroke and two TIAs by assuming I was dehydrated, or over tired, or whatever. The stroke was an incidental finding in a concussion post auto accident. At the time of the stroke I knew I was sick, but I just assumed the symptoms were due to things like stress, overexertion, and dehydration. I understand now how fortunate I was that it was not a more disabling stroke. I've had a lot of happy accidents, for example I received a phone call from a family member while having a TIA and they hung up and called emergency services for me. However, one doesn't want to depend on luck! I am so grateful for your response and those of others. I have a consultation with my hematologist next week and this has been extremely useful in helping me clarify my thoughts. Thank you for the compassionate response.

[Jumper99 in reply to 47ginger]

You’re welcome. Good luck with the haematologist.

[MaryF Administrator]

Have you had the three relevant blood tests, usually two sets done, twelve weeks apart? That is a good starting point. I was sero negative for years as were my children, and even to this day sometimes it is not there and other times it is in tests. MaryF

[henyrjonze]

I don't know where you live, but here in the US very few GPs know what APS is. My family MD knows, as does my rheumatologist. On the other hand, everyone knows about lupus and other related diseases. When I have to give my medical history to someone, I just say "APS" and let it roll of my tongue. Or I tell them APS was on House, which it was.

[47ginger in reply to henyrjonze]

HA! you guessed it! i don't think my pcp knows what it is. almost every practical thing i know about aps i learned from the uk website. maybe i should look up that episode of house! thanks for the laugh! have a nice long weekend.

[henyrjonze]

Hi! The House episode in question is, I think, in Season 6, episode 4 or 5. It doesn't "teach" us much about APS, but Hugh Laurie is brilliant, as always!

[47ginger in reply to henyrjonze]

yes, i looked it up. and as for hugh laurie, i'm still re-watching episodes of jeeves and wooster!

[henyrjonze]

Have you had your lupus anticoagulant, anticardiolipin. and beta2glyco-protein checked?

[47ginger in reply to henyrjonze]

i have. the big tripping point is that the hematologist is very reluctant to say aps, preferring to say that i am positive for the antiphospholipid antibodies. i was positive for anticardiolipin and beta2glyco-protein in two tests done 2 months apart, and after testing 2months later i was still positive. i have had a stroke and a couple of tias. if not having a diagnosis didn't have an impact on how i think about things, decisions i make and so on, i wouldn't be concerned, but it really does. example: i have to start thinking about medicare, should i be thinking about a snp plan? thanks-hope you had a good holiday weekend.

[henyrjonze]

Sorry. You got my message that ended in mid-sentence because my cat walked across my laptop. Anyway, people who test positive for all 3 antibodies are monitored in some way, or at least they should be. The doctor who does nothing: he/she is an idiot. Should be supervised by Dr. House.

[47ginger]

ha! more likely she is already being supervised by bertie wooster!

maybe that's the hesitation-i'm only positive for 2 out of 3 antibodies, still, everything i read says at least 2 out of 3 antibodies, at least 2 months apart, and a stroke, or miscarriage or something like that. what do i know-i'm only a patient...

[Lure2]

Hi there, I live in Sweden and I have been on this site some years.Most important to get a diagnose and Warfarin has been our lifesaver for so many of us here.

I am triple positive with high titres for 15 years. This illness will never go away even if the antibodies change up and down for some time.

Read Kay Thackrays books ....."Sticky blood explained, Hughes Syndrome" and More Sticky blood, Hughes syndrome".

Very good for friends and family to understand this strange illness we have here. Prof Graham Hughes has told us himself that her book is one of the best about this illness, and he is the one who should know.

Best of luck,

Kerstin