Re: APS diagnosis

Hi there, Just wondered is it standard procedure to be waiting 6 months for a diagnosis on APS. I have been told that I have the APS strain, and I am not sure what that means, but no official results are in for Lupus or APS.

I am very confused. I have asked my doctor but she just keeps saying that they have to be tested in batches whatever that means. I have severe kidney damage which she says is because of the APS, but the official results are not in so how can that be? I have been prescribed aspirin which I take daily.

Also has anyone ever been prescribed antidepressants for not sleeping. I am not depressed just tired from lack of sleep. I take blood pressure tablets which is causing the sleeping problems. I am only 36. Thanks for any responses, much appreciated.

20 Replies

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  • I am sorry you have to go through this. It's very frustrating getting a diagnosis many of us have had symptoms most of our lives with no explanation, nothing comes up on regular testing and dr's think we're nuts lol I have been told so many times that nothing is wrong I started to believe it and questioned my own sanity. I stopped telling my dr everything cause I was worried he'd think I was imagining things or something. I always feel stupid bringing a list with more than 4 things lol

    I was just recently diagnosed, I am still waiting to see a hematoligist. I live in Canada and hardly anybody has heard of APS. My dr suspected it and did clotting factor tests. This is the explanation i was given.

    The tests for APS and lupus anticoagulant antibodies etc are only done in one lab in my Provence and are not covered by insurance. The blood can only be drawn Monday - Wednesday lol and is sent there. When they have accumulated enough samples they do them all at the same time. Results take 2-4 weeks. If you are positive, you must be tested again. The tests should be done 6-12 weeks apart. 2 positives plus a thrombosis event is cause for a diagnosis. It took a long time! So did my post lol. Good luck. Hope you get a diagnosis soon. It sounds like your dr thinks the dx fits.

  • Nice to meet you Sassi. Thanks for the quick reply. Yeah I get the nuts part. Canada I hear is a nice spot, I live in Ireland but I assume it is the same procedure here. Although I am not so sure as my lupus tests have been ongoing since January.

    The worrying thing is that my kidneys are failing, I am now in stage 4, after only being diagnosed with this in January. I really wish I could forget about this. Thanks for the help and good luck to you too.

  • So sorry tAigers

    that you are having the severe kidney disease, and are waiting for the results of both of your tests and at your age. I was just near that age many years ago when I had my first severe cardiovascular event, but I'm afraid because I live in northern Australia, I suffered more as no doctors helped, so had to research myself, and found Lupus/Hughes site in 2007, with great help from there. But only in 2010, I had to fly to the top APS specialist to confirm my D/X. But still more probs. I have lived a great life, but know that in my part of the world we need not just knowledgeable GPs (mine is not), but rheumies, dermatologists, urologists, gastroenterologists who know anything about APS, as so many parts of our bodies can be affected, and my grandchildren are know affected. Have to get to gastroenterologist and urologist re next colonoscopy re kidneys tomorrow, after several visits over time. Me too re the nuts part. Didn't get to your country as yet, but ancestors came many years ago from Westmeath. All the best for good progress

  • Thanks marycath, my name is Catherine. Sorry to hear about your illness. I am sorry to hear about your heart. I hear you about the research bit, there is not much done on it at all. I find myself too researching all kinds of stuff and not liking what I read. I would love to visit Australia some day, my cousin is over in new south wales, if I have that correct.

    Here in Ireland aps is a fairly new concept to the medics, my doc is nice enough and seems to know a bit, will wait and see I guess. My kidneys are a real worry for me. I am finding it hard to accept it, it makes me angry. Let me know how you get on with yr kidneys.

    Yeah it is a nice country I guess and westmeath is a good spot, I live by the beach in the South so nice enough. Thanks for the help and the response,it has been very helpful. All the best to you too.

  • Hi there and welcome, sorry you are having such a time of this, has your GP got you under a rhematologist/hametologist team, it does sound as if some speeding up of your care needs to take place. Some people decided to take a private appointment with Professor Hughes at London Bridge Hospital, I myself did this, I am 47 and have probably had SLE Lupus since teenage years, clear clinical signs and symptoms... also APS Hughes Syndrome, now I have three other disorders. Since my ten year fight from the backward area where I reside, to be referred to St Thomas' and my own referral to Professor Hughes, things have improved for myself and children. There are lots of papers attached to the Hughes Syndrome Foundation Site, which you see attached to this forum, plus lots of books recommended. I have posted papers and books to the lot of them in my area! I hope things rapidly improve for you, and plenty of peer support and genuine advise and question answering on here etc. Mary F

  • Hi Mary,

    Thanks for responding. Nope I only have a nephrologist and a doctor at the minute. I am going to look into seeing Professor Hughes, he seems to be the guy to see. This waiting is so disheartening and meanwhile my kidneys are getting worse.

    Sorry to hear of your illness, I hope you are doing ok now. I will have a look at the papers and the books thanks as I really don't know that much about APS.

    Thanks Mary I hope so even a bit as I am so tired of feeling like this. This site maybe the answer for me, I have only been on here a day and ppl are so nice and helpful. I will keep in contact and thanks again. tc

  • make sure that when you ring Professor Hughes secretary that you tell them how urgent it is, re your kidneys etc, and at the same time push your local hospital/GP... maybe somebody on here will know somebody closer. Try and stay positive and calm and chip away at both things Mary F x It would help print out some things to give to the people who are supposed to be looking after you. Mary F x

  • Will do thanks Mary. I have appointment with Doctor Thursday so will hopefully get somewhere then. Thanks for all the help.tc c x

  • Hi, I am also in Ireland & I understand yr frustration. I have found that most drs want to believe this is only an issue during pregnancy, and take some panadol if u feel unwell..... I was diagnosed in Sydney so not sure how the testing works here but this does sound ridiculas that u are waiting so long. Are u under the renal clinic in cuh? I think there is a lupus clinic attached to cuh, surely yr renal drs can push yr tests thru. Also, if u are not happy with antidepressants, ask if there is an alternative. I haven't suffered lack of sleep (I wud hav opposite) but if yr blood pressure was controlled u shud be able to sleep. Have u been told that yr kidney damage can be reversed once under control?

    I wish u well in getting yr diagnosis & hope yr kidneys recover,

    Enjoy the lovely sunshine we hav today,

    Dani

  • Hi Dani,

    Sorry to hear about yr illness. , I am with WRH, they are nice but the waiting period is like forever. I did try and get into CUH to see Dr Plant but they said that I would have to do the biopsy all over again. The pain I went through with the clotting in the first place doesn't entice me to do that again. Also there is a risk that the kidneys will be further damaged.

    Well she said that the tests were done incorrectly the last two times something to do with the wrong number of bottles or something. Now she is saying that the blood are only done in batches and that is the delay. I have spoken to my doctor repeatedly about this but he thinks that I should just stick with the her. It is so disheartening. I may just change my doc, but I think I def will look into Dr Hughes.

    I dunno about the antidepressants tbh I think it will make it worse. I was sleeping alot before but now it is crazy I am up all night and exhausted the next day.

    You know you did give me hope when you said that it may be reversed. No is the answer to that, the biopsy showed 70% damage, Imagine and I never had a problem with my kidneys before. In fact it has gone from stage 3 to stage 4 since Jan, and it is all suspected APS!!

    Thanks a mill Dani for the advice it makes me feel better just to chat about it here with ppl who really understand. Will keep in touch and hope you are ok too!!

  • Hi Catherine, I'm in West Virginia in the States. And yes, this is a beautiful state covered with mountains and forests, but yes, we are a bit backward, and yes, since of America's pioneers moved into this beauty in the 16 and 1700s and then refused to leave, we are mostly related to everyone else (assuming you keep up with your genealogy.)

    It took me several months to be diagnosed. Tests were run but results were lost. On the urging of childhood friends who had become doctors in other states I went out of state for my diagnosis.

    Also know that a positive test does not automatically give you diagnosis; they usually want 2 positive tests with a (?)3 month difference between the 2 positives (?) (In my case those "lost" tests -- not really lost, just not read -- were found and voila! I had 3 positives over a 7 month spread.)

    But it doesn't sound like you have 3 months to spare. I would second the idea that you try to see Dr. Hughes in London. That would be better then to finally hear a provider tell you that the test has finally been run, its positive, but now we have to draw and wait for another to come back positive.

    Keep us informed and try and feel our support coming through your computer keys.

    Gina

  • Hi Gina,

    Nice to hear from you. I am not that familiar with West Virginia but I hear it is a lovely place. Seven months is a long time to wait for a diagnosis, it must of nearly driven you crazy. I am at the end of my tether now, and it has only been 4 months of waiting on test results. I guess it is the kidney that are my main concern. Me too they did the wrong tests for me

    You know I think that I will inquire about Dr Hughes as I am going nowhere fast here. I do get comfort from this site, I have only been on a day and I already feel a bit better. Thanks Gina will keep in touch and let you know the story.

  • Well I did not have ANY positive tests and still got a diagnosis after my stroke. However I had to go to Prof Hughes to get it. Once he speaks things happen.

    Personally if I was in your shoes and my Kidneys were failing, If I could afford the trip thats who I would see.

    As for taking antidepressants. Its not unusual to be prescribed an SSRI or SNRI in small doses for pain or sleep. People suffering with Fibro are prescribed these as a matter of course. However as you say its whats causing your sleep issues that need to be addressed in the first place. If its being caused by other medication then throwing another drug at it is really not useful in my opinion so perhaps this needs a discussion with your GP.

    I would make an appointment (a double so you have plenty of time) and have a good old chat with her so that you can really explain to her the things that are bothering you. Perhaps when she understands that this wait is upsetting you so much she will be inclined to do something about it. If not, well you know what your options are.

    We are all with you here!

  • Hi,

    Thanks for the response. This site is filled with such wonderful ppl it gives me hope. I must look up that professor, he is in England? Sorry to hear of yr stroke and the APS.

    I feel that they all think that I am crazy imagining these problems

    You know I did try and chat with my GP on Friday but he thinks that I should stay with her and she thinks well I dunno.

    I know she means well but it is too drawn out at this stage. Thanks for the advice, will take it on board and will keep in touch.tc

  • Yes London Bridge Hospital, London Lupus Centre

    londonlupuscentre.co.uk/

    Mary F x

  • Thanks Mary

  • Im only 34 and had 8 T.I.A in the last eight months. They took two months to diagnois APS with negative antibodies. But im waithng for another opoinin for St.thomas under Dr.Kamashta.

  • Hi Dulcie,

    Sorry to hear of yr illness. Maybe it is normal to wait this length. I did try and get a second opinion but I was told here that I would have to wait and do biopsy etc all over again. I really hope they find a cure for this. I am in Ireland so I am not familiar with Dr Kamashta but tks for that and I will look it up. Take care.

  • Dr Khamashta is now Prof Khamashta and he is excellent. If you can get a referral to St Thomas Hospital Lupus Unit then that would be a good thing.

  • Thanks Lynn will get on it tmw, thks for the info.

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