My story

Hi Everyone,

I've only just found this site and have been reading all your amazing stories for the last couple of days so I thought I would share mine.

Ten years ago it was found that I had some blood disorders - lupus anticoagulant and anti dna antibody. It was found by accident and was told to by the doctor to try to forget about it as loads of people have these abnormalities and nothing ever happens to them. Even though my mother has had 3 clots and my grandfather died from a PE.

I had two more children in that time and had pregnancy related thrombocytopenia (no platelets) which was scary when I had an emergency casearian with my third and last child as she was undiagnosed breach and was 10lb 6oz!

I had lots of problems with my kidneys over the years and have kidney stones and recurrent UTI's which are now treated with long term antibiotics. I have ovarian cysts which are causing me problems and have had cellulitis twice and uvitis once.

After my third child I developed intercranial hypertension and I really thought I was dying! Its also called a false brain tumour as it mimics a tumour - horrendous headaches, loss of balance, hearing and papliodema (swelling) of the optic nerves. This is controlled with diruetics to reduce the amount of cerebal fluid in my body.

But last year was when it really hit me - in June I was diagnosed with a huge clot in my vena cava. I was put on warfarin and was theraputic when I got a second clot from my groin to me knee. So now I am on clexane injections which seem to be working for me.

For the last six months I have had a pressure in the left side of my abdomen / chest which is almost constant. It goes when I lie down or do exercise. I have scans, ecg, chest xrays, blood tests but no cause for this pain can be found.

I think the doctors think its anxiety (as I cant take a deep breath with this pain) but I dont think so.

I have been told by my haemotologist that I 'have probably got APS' but was told no more than.

Do you think all these things are connected and what specialist do you usually see for APS?

PS I'm 39 but feel about 79!!

Sorry I've gone on and on, didnt realise till I wrote it all down how long this crap has been going on

Helen ;-)

13 Replies

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  • Hi, Helen.

    Welcome to the Hughes Syndrome Foundation Blogspot.

    I'm sure that, like me, you'll find all sorts of fantastic information,sympathy and help from those of us here!

    I am fortunate enough not to have this disease, but am a carer for one that does and sees first hand what happens when things go wrong.

    Most of what you describe is relevant to aps and would seem to fit it well.

    Although I'm not a medical professional, I would disagree with what the doctors told you ten years ago and say I think you almost certainly do have APS., and your haemotologist, should have (if they knew anything about APS) given you an explanation of what it's all about.

    Having said this, I'm sure that you'll discover for yourself, that there is so much we don't yet know about it but are uncovering more and more as time goes by.

    Again, welcome to this site.

    wayne L

  • hi Helen- lots of good info here like Wayne says , copy the info take it with you and spoon feed them if thats what it takes [a kick in the shin works to ] . insist they read it and explain to you why they wont do the tests ,and just why it isnt aps. as your mental well being is also in play here. make them think its their idea if that what it takes. squeaky wheel gets the grease. Paddy here has more info than anyone person could need, i havnt heard from him in awhile, but if you wake him up you wont be disappointed im sure------------- his nephew---jet

  • Hi Helen, and also welcome to the site and thank you for sharing your story.

    I agree with Wayne and would suggest you chat to your hematologist again and perhaps tell him/her about this site.

    You can ask for a private referral to Professor Hughes in London, who as founder of this dreadful disease has brilliant reviews from his patients.

    Do you have a supportive GP?

    I am sure you will find lots of useful info here and many lovely people who are so supportive.

    Take care, be happy and healthy

    Smiles

    :) Lesley

  • Hey Lesley

    hope you are well??

    Can anyone ask for a private referral to Professor Hughes? Apart from going to have my INR checked every 2wks at my Doctors surgery I haven't spoken to a specialist about APS ever!!!

    The nurse does the test I get my result's and come home!!! There are so many questions I have but no one to ask?? Have had numerous blood test's because of fatigue which they cant seem to explain and now I'm realising that this is part of my condition. Also suffer from forgetfulness which is a standing joke in my family as I forget everything!!!

    Would be great to speak to some one who know's what they are talking about.

    Great to know Im not losing the plot!!!

    Many thanks

    Bonnie

  • Hi there Bonnie, Yes I am good thanks :)

    Yes anyone can ask for a private referral, to Prof Hughes - but for you to know you can in fact ask your GP to refer you to any doctor - for example if you would like to see a rheumatologist just ask your GP to refer you, they cannot refuse. BUT I would go for the private referral to Prof Hughes if you can afford to. You are not losing the plot, the forgetfulness, tiredness all seem part of this horrid illness - Does your GP or Nurse not know much of APS? it seems as if they don't! :( - You could also tell them of this site perhaps, there are many blogs they could read :) I have heard it said, the fatigue and forgetfulness can be attributed to the sticky blood not carrying the oxygen as needed to the brain... perhaps that could be one reason.

    I hope this helps, and Do let us know how you are getting on :)

    Smiles

    Lesley

  • Helen, Are you in the UK or the States? I suspect that APS/ Hughes is not as well known in the States. If you are here in the States it may be time to head for a regional med center to find a doctor who has treated it before. I was diagnosed by a hematologist in Cinn. and will be happy to share his name with you if that will help.

    Oh and yes, English major housewife that I am -- I'd bet Mit Romney that $1000 that you do have APS.

  • Hello there, thanks for sharing your story and welcome! If you are in the states I have more info for you, and wherever you are located I am sure there will be people on here not too far away. Mary F x

  • Hello and welcome...as I have written before I strongly believe that it is best to go to a Rheumatologist....an MD who understands the "entire picture"...specialists tend to have tunnel vision. If you are in NY the Cornell-Weill medical center in NYC does research on APS

  • Hi Helen

    I too am new to this site and cant stress enough how great it has been for me. So much information and support and soooo many lovely people to share their wealth of knowledge. I have learnt more in the last 2 weeks than the last 20yrs!!

    Read their stories and take from that what you need , I have found things have started to make sense to me,hopefully will help you too.

    Take care

    Bonnie xx

  • Hi

    Thanks everyone for a very warn welcome and all your advice.

    I am in Manchester, England so I am going to try and get to see Prof Hughes. I will speak to my GP, who is actually very supportive but openly admits she is at a loss with how to help me. She actually asks me where I want referring to and she does take my concerns very seriously (well she would after missing my first clot and telling me I had another kideny stone!!).

    Look forward to 'speaking' with you all again

    Helen x

  • That's good your GP is truthful and will refer you to the specialists. Yeah, my first doctor said my pain was simply "pleurisy" and precribed more antibiotics for bronchitis when I had PEs in my lungs. My husband finally dragged me to an ER with 105 degree temp when I could barely breathe without pain. Doctors make mistakes, but we are the ones who pay for it.

  • Welcome, Helen.

    Oh my -- "I have been told by my haemotologist that I 'have probably got APS' but was told no more than." I am curious where you live and what medical plan you have. Change your doctor! Any competent doctor making that statement would follow up. No only one, but two factors in your blood were discovered to indicate APS. The doctor should have immediately put you on a baby aspirin. Then you got a clot --- well, actually major clotting! That is the diagnosis of APS, with another follow up blood test for the antibodies 6 months later. (Though a few with APS don't test for them). You sound like a classic case -- shame on the doctor for not explaining more or pointing you in the direction of reading to learn about it. He may have thought "Well, she's on warfarin which is the APS medication, so that's about all she needs to know." You had a clot on warfarin, which can happen, but perhaps you weren't in therapeutic range (APS hits each of us so uniquely) -- now they are trying to push guidelines for genetic testing when starting warfarin since it's been shown that people react differently to what range they need and gene testing can give insight to proper dosage. Also, since it sounds like your doctor did not explain much, were you told of all of the dietary rules to follow when on warfarin? Within 3 days of chowing down on salads or other heavy Vitamin K intake, you could have dropped to a too low of INR to cause your 2nd clot.

    I know how you feel -- "I'm 39 but feel about 79!! "

    Learn as much as you can and protect your mental outlook.

    There is hope that with the right anti-coagulation that your APS symptoms will improve.

    Many APS sufferers have secondary Raynaud's which brings painful fingers and toes. I have found that 200 mg of daily niacin seems to keep mine in check. (I don't mind the flushing ;-) And I sleep best naked, except for soft, furry gloves and socks! I use gloves everywhere, especially going into supermarkets frozen food section.

    But we're all different, so it is good to read others' stories to see what has helped with them and perhaps could try to see if it helps with your own symtoms.

    Look up B6, B12, & Vitamin D. Even a mild deficiency can cause problems. Of course, check with your doctor for your individual needs. I work best with a rheumatologist who tested me and found low B12. It could be power of suggestion, but it seems I now have fewer flare-ups and not as much fatigue with the supplements. Where do you live? If not in a sunbelt area, you should try for 10-15 minutes of sunshine a day or definitely take a Vit D supplement.

    And a good B vitamin intake, which we don't absorb as well when we age, helps with "brain fog" symtoms.

    My personal opinion is that hematologists are more "black and white" with what's going on in your blood, where rheumatologists have to rely more on many factors of diagnosis and subjective symtoms to combat the autoimmune problems. I haven't seen a neurologist, but APS is more a rheumatic disease like lupus than a neurological one like MS, though our APS symptoms cross the boundaries. My rheummy says I also have "UDTD" - undifferentiated joint tissue disease: meaning not enough of any one thing to call it lupus or MS or RA; all those lovely autoimmune disorders. It would depend on what your most troubling symtoms are as to what specialist you should see. The pain in your left side sounds like a strange one for APS -- do you think it is lung related? After my PEs, I've had a couple of pneumonias and one side of my chest area was sore for a long time. My breathing was impacted for at least 6 months. If it is a clot causing pain, your anticoagulation is the only med, and in time should come relief.

    I think the most important thing for you is to make sure that every doctor you see knows your whole history and meds with other doctors, and particularly knows something about APS. You should rely on your own knowledge of APS to ask questions and test your doctor-- and find another one if you don't feel like your questions are being answered adequately.

  • Ok, I had a typo ... "UCTD" is for "undifferentiated connective tissue disease". I also have seen MCTD for "mixed connective tissue disease." medicinenet.com/mixed_conne...

    It all boils down to the same as APS -- a little of this, a little of that. Each person having their own bag of goodies with autoimmune symptoms including arthritic joint pains, so we have to be proactive detectives with our doctor's help.

    That's great Helen, if you get referred to Prof Hughes. You know you're in good hands to find the best answers.

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