Hi , what a great site.... I would love to hear people's ideas , I feel very alone and like nobody (gp) cares .....
I'm a 39 yr female that from as far back as I can remember , probably my 20's have been very aware and frustrated with my memory ...friends and family joke with me about it but I find it quite scary at times..I loose words and genrally feel cloudy ...I told my daughter to stop talking to me one day because I was trying to cut up an onion for dinner...too much going on makes me feel more cloudy ...I haven't always felt like this but feel like these were the start of my problems ...
I have had 3 miscarriages 7, 12 and a late 25 .... I now have 3 healthy children but after the miscarriages was advised to take an asprin a day with any future pregnancy, I had no blood test it was just a suggestion ...It had no more miscarriages after that ...
3 years ago I started suffering with pins and needles everywhere in my body apart from my torso ... I have had them everyday since ...They are worse in the morning I wake with them ..as the day goes on they genrally get better. .They are the bain of my life ...
I had them in my face once and thought I was having a stroke...I have times when they are stronger than others there seems no Rhyme nor reason.
I also have an ache in the top of my right arm ..like a dead arm ..its there all the time ...
I struggle with my eyes too , for what seems no reason they start watering and won't stop until I have to stop what I'm doing and close my eyes for some time ...it happens while I'm driving I have to pull over until it passes.
I have seen countless g's and a n urologist. ..The Dr's say they have no idea ....and n urologist says on paper his looking at classic MS symptoms , all the test come back clear ....
2 weeks ago I got woken by a stabbing pain in my head ..omg the pain it stayed with me on an off for a week ..until it moved onto a "normal" headache ...
I Google sharp pain in head and come across APS ..... I have spent 15 minutes practically begging the gp to give me the blood test ... well after a lot of explaining and pursuing I went for the test today ...It seemed to cause confusion in the blood test department and my Gp had never herd of it .... I need support from somewhere or something ...I know I'm not well but can't get help ...
Jules
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juzza
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Hi there and welcome, and join the club so to speak. Getting our GP to do the tests is a great start, some GP's have really never heard of the disease. I do suggest writing short email, keep it short and too the point to the GP, via his or her secretary's email address, put these links in.
A few days and be aware also that some of us are Sero Negative for Hughes Syndrome/APS please look at the pinned post with that subject matter should it come back negative. All the best. MaryF
Hi and welcome as Mary said "to the club"! Many of us are diagnosed only on symptoms. I was "lucky" to have all the antibodies so it was a bit easier to get a diagnose.
I recognize practically all the symptoms you describe. So good that you have found us!
I prefer the book "Sticky blood explained" by Kay Thackray. She has got APS herself and describes how it is to live with this illness and how much better we feel when we are well anticoagulated. "Sticky Blood "is the same as APS (Antiphospholipidsyndrome).
Hi , I saw my Gp today to get my results ... All three were satisfactory ... All I know is the levels should be between 1 and 10 mine were 2 , 2 and 1 ..... are these high or low? My GP has dismissed them anyway and wants me to go back to see my n urologist. ... Help I'm so frustrated ...
Have you not found your APS-specialist yet? He or she will understand your symptoms and also "get" what you tell him/her. You may be sero-negative and then you really need a Specialist on this illness.
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