I just wanted to ask while I am awaiting my second test for APS, if the first test is positive and the second is negative does that then rule out Hughes altogether? Also does anyone know what raised immunoglobulin mean if your serum electrophesis is normal? Is it really irrelevant?
Thank you x
I have never had negative antibodies during 13 years. (The hospital in Stockholm test them twice a year so far and I have all the 4 antibodies there are for APS, positive and in high titres also, every time.)
I think I am quite unusual because you can have APS with one test positive and the other negative or both negative. It is the SYMPTOMS that counts for a diagnose and only an experienced APS-Specialist can give you an answer.
If they are negative perhaps later on they are positive or vice versa.
Good luck for a positive outcome!
Kerstin in Stockholm
Antibodies go up and down. As Kersten observed, symptoms are indicative.
I am really confused about this whole thing. My Dr says if the next test is negative the first was just a fluke as such despite my symptoms.
Maybe someone will recognise some of these symptoms and have a viewpoint positive or negative as I have had all i can take lately. I'm becoming very stressed and depressed. Each specialist just looks at the individual symptoms and not the whole.
Neurologist... 22 yrs migraine and functional neurological disorder diagnosed due to loss of limb use and speech at times with and without migraine. Visual snow and sight problems. White lesions shown on mri told it is probably not of any concern everyone gets them with migraine?
Vertigo, Dizziness and loss of balance.
Constant fatigue not helped by rest or sleep, painful joints aching everywhere, flu like symptoms. Diagnosed ME and fibromyalgia 15yrs ago.
Raynaulds, tinnitus, night sweats, severe chest pain, Cardio diagnosed avrnt and tachycardia says it was due to long term stress over worrying about heath constantly apparently!
Brain fog, memory loss, not remembering names, faces, swapping words, horrible spaced out feeling. Awful symptom cannot shift this one.
Severe stomach pain not found anything on colonoscopy or endo, like tight band around middle and deep aching throughout constant for 6 months solid now.
Just done of my issues as such... Dr says if this test is negative then I have a psychosomatic illness and I have to accept it and move on as I now have Ha and there will be no more tests.
Current tests show very low vitamin D, anaemia not responding to iron increase, one positive lupus anticoagulant, two raised immunoglobulin but serum electrophesis normal so Dr says tests mean nothing.
Running out of hope now that I am slowly dying and they are gonna dismiss me as I'm anxious all the time now. I cannot afford to go private or travel far so I'm not sure what to think anymore. Feel so depressed now about it all and I don't know how I can cope with anymore tests not fitting in a so called box! If the second test is negative then could the first have been a false positive and how would I know now. So confused 
So you are diagnosed MS and Fibromyalgi 15 years ago. It is not impossible that everything is caused by a possible APS.
I do not know in what country you live and how old you are. Was the first APS-test positive? Your post is called "Lupus Anticoagulant". Do you have a positive Lupus Anticoagulant?
You do have a lot of symptoms and many diagnoses.
We have told you to see an APS-Specialist and that may be very important in your case,
Kerstin
Hi Kerstin, I am in the UK. I had one positive lupus anticoagulant and have been told there must be two positive 12 weeks apart or the first test is considered to be of no concern and just a fluke. I'm confused to why it may be positive and then negative and what the implications are. My Dr says you can rule out Aps if the second test is negative but I have read on here people have fluctuating results and still have Aps. Very confused!
Also it was ME/Cas not Ms the Dr diagnosed me with 15 yrs ago on symptoms.
Thanks
ME can very well also be APS. Exstreme fatigue is a common symptom. Sorry I read MS.
We have found that Neurologists do not "get" this illness APS.
We feel so confused and depressed by doctors who will not believe us and who do not understand what we tell them and sometimes think it is a mental illness. It can take years before the right doctor will finally help us with the correct anticoagulation and stop all the clots and deterioration of our body.
I hope you will find a way to get to that doctor who you really need very much. Your life is well worth it I believe.
Kerstin
Hi bobbywgirl13
Your symptoms read very very similar to what I had. It took me 22 years to get a proper diagnosis. I now know it started in childhood, I'm 44 now. With my aps I never suffered migraines or miscarried which is maybe why it took longer. my main symptoms were dizzy spells, loss of vision (mini strokes), numbness & tingling, joint pain, abdominal pain, brain fog & severe memory loss. (I was unaware of my memory loss & six years of my life is gone). Anyway I had white matter lesions on my MRI. Twice neurologist diagnosed silent migraine. I then went on and had a silent stroke. The point here is you are NOT crazy & from the sounds of it have some type of autoimmune disease. My experience is neurologists are useless in my 3 times I went. Many many many times I was misdiagnosed & my medical reports even list me as have "psychological " problems. (I obtained copies of all my medical notes). Do you know if your specialists have done a ANA test (anti nuclear antibody). ? If this comes back positive then it confirms you have an autoimmune disease but won't tell you which one. Whatever the case I agree with above, diagnosis should be based on symptoms, even if you do happen to test negative for APS second time around. Good luck & I hope you get some answers very soon.
Carmen
Hi Good4u,
Your symtoms are similar to mine. No more lost vision after a correct warfarin treatment. It is unbelievable!
I am so glad it worked for you also.
Best wishes from Kerstin in Stockholm
How were you eventually diagnosed? 3 neurologists have told me it's functional and migraine and seen the rhemy a month ago who looked at my fingers and toes only and said joint pain not RA? I said I have a list here of symptoms and he said you were referred for joint pain and I am to rule out RA according to your gp. I didn't know any better at the time so I said what next and he said you have fibro according to your medical records which would explain all of it with some soft tissue rhematitis and that was it. He wasn't interested in looking further because of a fibro/me diagnosis 15 yrs ago. I have had 9 miscarriages, last one in Oct at 12weeks but apparently that doesn't count as I have had 4 children over 23 years?? I feel so fed up. How are you coping now you are diagnosed? What treatment are you on? X
I had to reach a crisis point before I eventally got proper treatment which was February 2012 even though I tested positive for APS in 2005 & 2010. My neurological symptoms which began in 1995 were never "connected" to being APS. I even told my neurologist in 2006 that I tested positive for APS in 2005. My MRI showed white matter lesions which he concluded were "typical of migraine". Sound familiar??? Yep, I supposedly had migraine. My journey is a long one. It consists of many X-rays, ultrasounds, colonoscopy. A weeks hospital admission in royal Perth hospital who discharged me in a worse condition than when I went in. Blatant negligence! My principal diagnosis was "leg & back pain" & psychological problems. I was furious when I obtained my medical notes. Of course after being discharged I deteriorated & eventually got proper treatment. It was one of the most stressful & depressing times of my life.
Besides APS I also had vasculitis. For this I had cyclosphomide infusions, high dose prednisone, plaqnil & when infusions finished I was put on mycrophenolate which is an immunosuppressant.
Today I am only on warfarin & have not had a TIA since starting in February 2012. The day RPH first discharged me I had lost complete feeling in both my feet. They'd "reassured" me it was most likely transient. This was actually the vasculitis cutting circulation & my peripheral nerves dying. Three years later much of my damaged nerves have regenerated and I've regained feeling in my feet. I believe the warfarin helps this to.
I feel very blessed as I'm generally in good health. For me trying to keep stress levels down is imperative. I had chronic stress & this was toxic to my body. Also a stressful job. I'm content now & this helps. I try to eat gluten, dairy & sugar free, also do some exercise every day. I take lots of supplements , in particular vitamin D & K2. I've been brought up to use natural remedies for illness so hate taking medications but I concede to warfarin for now.
I feel for you & many of us have been in the same position. This forum is fantastic & you will find lots of support & knowledge. From my experience I cannot only suggest you be assertive with your doctor/specialist. Take someone with you who can be your advocate. Wishing you the best. Big hugs from Oz . Xxx
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