I'm in the process of possibly being investigated for APS. MyGP is seeking advice and guidance from haematology as she seems to think the blood tests needed arent available in primary care.
Basically I had early severe pre eclampsia in my first pregnancy in 1991. I was very unwell and sadly my son died in utero at 27.5 weeks. During my next successful I was on low dose aspirin. I had an early miscarriage pregnancy number 3 and then during succesful pregnancy number 4 I was put on low dose aspirin again. I also had a blood clot in my calf a few weeks after having my second son.
I have a history of migraine in my teens but thyese actually went away. However about 2.5 years ago they came back with a vengeance and I've also had a lot of isdues with my balance. My neurologist put them down to vestibular migraine but I dont really fit the criteria and none of the 7 anti migraine drugsI've tried have helped so I've never really accepted that diagnosis. I also have other autoimmune issues like underactive thyroid, pernicious anemia. I suffer pins, neeedles i my hands and feet all the time and no one has ever explained why. I also have started getting them elsewhere as well.
I get a lot of joint pain but have always put this down to having Ehlers Danlos but am how wondering. Its funny but the only reason I wonderedabout APS was another lady on the thyroid forum mentioned she got the VM diagnosis but she said she was being investigated for APS instead and when I googled it it rang a few alarm bells.
Lastly my now adult son is on warfarin long term due to having a DVT and whilst I know APS isnt genetic it seems it can run in families. And my youngest son has just finished a course of low dose blood thinners as he had an SVT in June.
I just wondered if anyone thought APS could be a possibility and what my next steps should be and if Haematology are the best specialism to be advising my GP.
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Sparklingsunshine
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Heamatology could be the best depending if they are APS specialists - same goes for Rheumatologists. Both of these treat APS patients or will have some knowledge but you need someone who is a specialist, who is seeing and treating people with the disease on a daily basis not run of the mill Dr’s who may only see one patient a year.
There are very few knowledgeable specialists based in the UK but most are in London. If you send me a chat of your location I can give you some idea.
On the face of it your GP can do the aPL tests but they will need to be repeated after 12 weeks anyway. On top of that a specialist can also do other tests that can give them a general idea and those together with your medical history, family history, and symptoms should be enough to give a diagnosis.
If I were in your shoes I’d be saving pennies to see one of the “specialists” privately but get your GP to do the tests first to save a bit of money.
So sorry for the loss of your son and all that you have been through. Your history does sound very much like many who have APS but will you need to see a specialist as Star 13 has advised. Do keep in touch with the group s you will get a lot of support and useful information . I hope you get answers and the right treatment soon
I've just been on the APS charity website and it seems I have two APS specialists working at my local hospital, one a Rheumi who I saw for my EDS diagnosis years ago and one Haematologist. So maybe I might get some advice from one or t'other.
Yes, your symptoms resonate with my experiences! Do seek out one of those docs experienced in treating APS. And now that science and computers are making advances in molecular biology, there is data coming that expressions of this or that hormone may have slight genetic variatins. And those variations may trigger autoimmune responses to things like... food ingrediants. Our founding doc, Dr. Graham Hughes noted a strong correlation between gluten sensitivity and APS. Indeed, I was once triple positive. But starting about 3months after going gluten free I have become triple negative. I continue to take warfarin, but perhaps I really don't need it anymore
Your history sounds similar to people with APS. Don't worry about it until you know for sure, there is a test that checks for all 3 markers. Ask a Hematologist or Internist to have the test ordered for you. I have had most of the issues you noted and I am 2 of 3 tests positive. It is crucial to find out so that medical precautions can be taken. If you ate positive. NEVER go on Eliquis as it is contraindicated for APS patients. Best wishes to you
Not sure if you are in the UK or not, or whether this is a postcode lottery thing, but when I was tested it was definitely via primary care (i.e. GP). In my case my stroke consultant wrote to GP to ask them to do the tests since I was out of hospital by then. Far as I know they are standard tests and use standard collection tubes (which is all that really matters when/where the blood is taken).
Note that to be confirmed positive needs two sets of tests at least 12 weeks apart.
I would be wanting the GP to do the bloods (at least first set) to speed things up - otherwise I think you maybe risk Haematology taking weeks/months to review referral and then saying "GP: please do the bloods and then refer again if +ve".
Not unusual to have more than one autoimmune disease, many of us on here have several. If your GP wishes to test, those three tests are available and a good idea to also look at your Thyroid, B12, Folate, D and Ferritin as it can all cause a problem. MaryF
For some reason my rheumatologist didn't do the repeat but due to queries around hrt my GP decided to order the repeats: 2years later.
She warned me that usually they can only be ordered through a hospital department and she might get a notification saying I would need for it to ordered by rheumatologist but it wen t through okThe results took quite a while, think about 2 and half weeks.
Antibeta 2 glycoprotein 1 IgG was still there. She had read up about blood problems and hrt and was able to reassure me that I could have it as long as it was transdermal.
I wouldn’t totally dismiss the vestibular migraine thought … after an APS related thrombosis, I continue to deal daily with vestibular injury symptomology …. I’m hoping an SPG will help tease this out, but I can’t get one until end of October … our medical system … sigh. 😜
The issue I have is VM has a pretty set criteria, dizziness and balance issues lasting from 5 mins to 72 hours, spinning vertigo, nausea, sometimes a headache, but often none,sensations like pins and needles, even numbness in the body, light sensitivity, sound sensitivity, tinnitus.
I have never had those. I do get sporadic migraines, but they are very much the classic variety, wura followedby painful headaches. and I've never experienced dizziness or balance issues during them. I've tried 7 different anti migraine meds plus triptans and if it genuinely was VM I would have thought some improvement would be noticeable.
The only issue I have is balance issues or disequilibrium, only on standing or walking. Not all the time, some days are worse than others. It tends to get more noticeable as the day progresses. My vestibular physio has suggested I have cervicogenic dizziness coming from my neck. I have Ehlers Danlos so very bendy joints and tendons. Her explanation makes more sense than VM.
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