Please help, tests results are not good

[LookingforAnswers15]

hi, please help me figure this out. I was tested for lupus anticoagulants and antiphospolipid bodies and they came back positive. So, my nightmare became my reality. So, i guess that means I have lupus (it is hard for me to even say it). I just found out and i cannot tell my family today. Tomorrow, I have to travel to the country where I was diagnosed with celiac because i still have insurance that will cover my every 6 month check up. Maybe it will give me time to prepare how to tell them. Although I have been preparing myself for the worst, I cannot stop crying.

Can you please tell me what this exactly means? My understanding is that there is a risk of blood clots. How can i even know i have a blood cloth? Does anyone have this and if so, what kind of treatment are you going through? I have had a chest pain for some time now. Any kind of advice is greatly appreciated. Please help. thank you.

 

Is it true that you can have lupus anticoagulants without having lupus? I just read that somewhere. I would not be freaking out if I lived in the U.S. or another more developed country. 

[kareng]

Before you diagnose yourself  & prescribe treatment  -  what did the doctor say?  What course of action? 

I know several people with lupus & they are living normal lives. 

 

[LookingforAnswers15]

hi Kareng, thank you for responding so fast. I think it just hit me when I did not expect it (I just had my blood taken yesterday) and I do not get to see a doctor for 2 more weeks at least. I have waited for a couple of months to get some test results (ANA, ENA, some APS test) and when they arrived APS test was positive, ANA slightly positive(whatever that meant) and the APS test has to be repeated since in order to diagnose APS (you need to repeat the test after 3 months). So, i tried not to think about any of that. However, this time the doctor also requested lupus anticoagulant test. If anyone can figure out what is wrong with me, I hope it is this doctor. So, since i moved, I finally got a gp, who I consider to be a good one because she immediately wrote referrals for everything I asked about. She looked at all of my previous tests and wrote them down. I feel that I need these immunology test to show what is going on. So, i immediately got tested for vitamin D because no one has requested it before. Now, I will get retested for IgG again and then Aps test.

Since I have had this chest pain for a while, a friend mentioned a lab that does all these immunology tests so I went yesterday.I was told it would take up to 2 weeks to get the results. I was ok with that because by then, I would be back at home and get a chance to contact my immunologist who asked for this test and I really trust her. Today, while I was just checking my email, I saw the results. It is amazing that they got the results to me in 24 hours but unfortunately the lab was already closed when I saw the email (not sure if they would be able to tell me more) and I leave tomorrow morning so I cannot talk with the doctor until I get back.

If it turns out to be lupus, I only have one body and one life so I will have to be figure out to deal with that, be positive and do the best I can. I just feel that all the reactions I got from people here were how scary the disease is. I mentioned before how my gastro. dr. said I was lucky that I was diagnosed with celiac and not lupus when I was hospitalized.  Thanks again!

[cyclinglady]

Dear Looking,

Just as there are many symptoms and problems from having undiagnosed (or diagnosed) celiac disease, there are as many for lupus.  I think you are just trying to wrap your head around this new health problem and I completely get it.  I felt the same when I was diagnosed with diabetes a year after my celiac disease diagnosis.  I did some research and learned to deal with it and you will do the same!  

I do not know much about lupus.  My grandmother had it.  My sister-in-law's 20 year old niece has it and she is a university student, working part-time and managing it.  There have been a few flare-ups, but she has gotten through them.  I bet that GI doctor thinks having celiac disease is a breeze.  "Don't eat gluten and you'll be fine."  We all know that is not that simple!  

Hang in there!  Eat healthy, get rest and do a little grieving (that's so normal!)  

 

[squirmingitch]

I really don't know much about the technicalities of Lupus either but my hubs & I have a very dear friend - she's like a sister to us both - who has had Lupus for at least 20 years now -- probably more like 25 years, possibly more. She is now 68 or 69 and she has managed it very well. She's had a few bumps in the road but she really has done quite well. She's managed so well by doing her research and diet & exercise. She does her Wii exercise every single morning. She drinks very little and eats a super proper diet rich in seafood & shellfish. Lupus has not done much to slow her down. In the last several years she's been on Cruises, regularly goes to the FL Keys & snorkels, goes to the Bahamas, travels many places in the US, and went to Costa Rica where she flipped a 4 wheeler & cracked 3 ribs as well as collapsed 1 lung. That did more than the Lupus has to her --well almost I guess. She has had platelet problems twice which she was hospitalized for and while not a picnic to go through, she recovered well & has carried on with her active lifestyle. I know from watching her that Lupus CAN be managed and you can live a very good life despite it.

[LookingforAnswers15]

Dear Cyclinglady and Squirmingitch, thank you for your supportive messages. I really cannot thank you enough for your help.  I apologize for not responding sooner. At first, since I was traveling, I did not have an internet access but later I just tried not to think about all of this, and I did not look anything up online unless it was what fruits and veggies I should be eating to prevent blood clots. Since I love painting, a friend of mine asked me to paint something for her new house so that was a nice distraction. I am back at home now and yet again getting more tests done but I know it will take some time to get my results. I am still waiting for my Vitamin D results.

One nice doctor whom I've just met told me that higher lupus anticoagulant results actually confirmed my APS diagnosis but did not have to mean lupus but that I will require more tests. I will have to do some tests to see  how many blood clots my body is creating. In the meantime, I am doing everything I can to prevent clots (drinking ginger tea, cooking with turmeric, taking Vitamin E, etc). 

I am glad I am back at home because I feel that these doctors at the immunology department are not only well educated but they are very kind to me. However, the problem is getting tests done since the hospital seems to often run out of some necessary chemicals. 

I am also going back to see my gp. She said she is willing to consider giving me B12 injections at least once a month since my B12 is still on the lower side of normal and I want to see if that will help. I have never had these shots but I think it is worth a try since my b12 vitamins are not making much difference.