Negative Anticardiolipin but told I have APS

[Texasgal]

I had elevated anticardiolipin and whatever other test shows positive for APS. On my second set of tests the anticardiolipin were normal but the other test went from 26 to 34. I miscarried at 15 weeks after a completely normal pregnancy until then. I get migranes, tingling, cold in my right arm, fatigue. In haven't had a blood clot just the pregnancy loss which is why they checked me. Does this sound truly like APS? They told me once I'm pregnant again the will start me on baby aspirin and heparin and have told me the APS doesnt cause these symptoms but I have read otherwise. Any help would be appreciated!

[MaryF Administrator]

Your story will sound very familiar to an awful of us on here. It certainly sounds like APS, I hope you keep some contact with the team/person(s) who gave you the diagnosis around APS. The actual Hughes Foundation Syndrome site, is full of very useful information, articles published, blogs from Professor Hughes etc, plus of course many contributors on here, there are many questions/blogs which people have loaded on, around APS and pregnancy, and the information and answers and sharing of histories is proving invaluable. Best wishes. MaryF

hughes-syndrome.org/

also in America: americanaps.org/

[Texasgal]

Thank you Mary! Do you know if altitude can affect symptoms? I live in Nevada which is a high altitude. When I go out of town to lower altitudes and more humitdity I feel a ton better! Do you have any information with this?

[MaryF Administrator in reply to Texasgal]

Hi there, I am afraid I do not, however other's on here may do... however have had a look for some things for you to look at. I felt to look at medicine aimed specifically at those travelling to high altitudes.

altitudemedicine.org/in...

aafp.org/afp/980415ap/h...

An interesting read at least. Mx

[travelnut in reply to MaryF]

Hi Mary,

Neither of these links seem to work - is it just me?

Kaz

[MaryF Administrator in reply to travelnut]

Sorry about that, they were there, and now have disappeared - (naughty)... however what I had looked at was medical papers/advise/studies regarding travelling to a higher altitude, plenty of advice out there, however as you already live at those levels, I guess you don't need to aclimatize... but there is a lot about headaches being worse when up high? rather interesting reading. If you go into google or similar there is plenty of info. MF

[jessielou]

Hi texagal

Welcome and glad to meet you!

So sorry for your loss, have been their and understand.

Re your symptoms take a look at the websites Mary mentioned, maybe print off info to give to doctors.

Quite a few of us have experienced the symptoms you describe. Take a look at suzipawz blog symptoms olympics for a few lists of symptoms. Doesn't mean they all down to Aps, some of us have other conditions ie lupus, sjorgens, Fibro as well.

Glad they will give you aspirin and heparin during future pregnancy. This is standard treatment in the UK and is highly successful as far as i know.

There are people who are symptom free outside pregnancy, but i'm not sure that there are so many.

Be persistent, a lot of the med profession are still learning about autoimmune disorders like Aps.

I personally find changes in weather and air pressure affect me.

I hope you are well today

Take care gentle hugs sheena xxxxxx jessielou xxxxx

[jetjetjet]

hi texas - my nuero told me that barometric pressure can have a drastic effect with some people with migraines , hurricanes , bad thunder storms , sudden change in barometric pressure , according to her can do these things ,makes sence to me , you may onto something there, certainly be worth checking, its a good start hope you start feeling better soon bfn jet

[Hidden in reply to jetjetjet]

This is what I believe. With thick or sticky blood the red blood cells pass through the capillaries more slowly and with more difficulty transferring oxygen, blood sugar and nutrients less efficiently. With changes in barometric pressure the oxygen may not be transferring as well hence the negative effects. All people with sticky blood in theory will have intolerance to altitude (again a change in barometric pressure). Most normal flights will not show this up because people are inactive sitting down and oxygen demands are low and planes are pressurised. Transatlantic flights should have a more marked effect due to there being less pressure in the cabin.

Deep vein thrombosis is associated with flying!

However try skiing at 7000 feet and you will soon find out what I mean