Hi there. From what I have heard that trip to pittsburg would be a good idea.. Often ana,s alone are not enough. Sounds like you need a lot more testing than you are getting. Go for it hon. hugs M

Thank you for your response Maztaz. I have had all manner of weird symptoms since I was a teen (in addition to those in my previous post, unexplained fevers, swollen glands, fairly serious asthma with hospitalizations, frequent infections, knee realignments, and now blood clots and vertigo). I've gotten to the point where I don't think doctors believe me, so I don't bother calling when I'm having problems, unless I know I need an antibiotic or the asthma requires Prednisone. My family doctor is pretty good and suggested Lupus but my ANA was negative, so he doesn't think that's the issue. I will ask about a referral when I see him next month.

Yes make sure you get that referal as you definately have things going on that need to be treated. hugs M

Hi... From what you have described as well as your blood results I think you have Antiphospholipid disease (APS) which can mimic Lupus to a T and make a person with it VERY SICK. I have APS (as well as the MTHFR gene which is very common to have with APS) and it is treated with immuno suppressant type drugs (and plaquenil) and not just blood thinners. A rheumy knowlegable about APS is usually the ones who treat it properly. The trick is finding a rheumy who knows how APS can affect every part of your body and cause severe inflamation just like lupus. Many dr.s do not treat this disease properly and it goes Undiagnosed often. The LA positive blood test plus your MTHFR gene and Factor V can all go hand in hand with APS. Call the next place you decide to go to and ask if they have experience treating people with APS. The lupus center probably does because it can be common to have lupus and APS. BUT, you can have APS alone and not lupus and be very sick from it (the APS). If they do, go see them even if it is out of your city. Blood thinners alone do not control this disease. It is auto immune and the antibodies need to stop being produced in order to feel better. Also, because of your positive MTHFR gene you need to take 1mg of Folic acid. This means that you either need to get the prescription strength or take 1 600 microgram pill (only folic acid) and one 400 microgram pill a day. The amount in a regular supplement is not enough for your body. Its basically useless. I have to take 1mg folic acid plus plavix daily. I get the prescription strength. Feel free to email me if you have any questions about this. I have had this disease for over 10 years and am pretty knowlegable about it. BTW, with APS you can test negative for the ANA. You will test negative for all lupus tests since it is not lupus. If your GP is good and listens to you, ask them to run the Beta 2 glycoprotein blood test. This is the gold standard test for APS. It will be elevated if you have this auto immune disease. I would put money down that this is what is going on with you. I was so sick from APS (and still am at times) that I just want to die. Once you get the diagnoses and proper treatment though you can get MUCH better. It is treated almost identical to Lupus.
Hope this info helps you
Hugs
Melissa

Wow! Thanks for the info Melissa. I have written up my entire medical history (yee gads it's lengthy) so that I don't have to try to remember all the diagnoses I've been given over the years. I had given up ever getting an answer until I had the clot. I've definitely had more blood tests this year than ever before!
Julie

Hi Julie,
Please make sure you get that Beta 2 glyco test and also the russel viper test if you havent had them already. One of the main causes of miscarraiges and clots is APS and so many dr.s dont even know about this disease. I was recently mauled by my donkey (yes, you read that right) and urgent care sent me to the hospital because of my being on blood thinners and my APS in fear that I may have had internal bleeding. The ER dr. was clueless, had no idea what APS was and didnt even check me for bleeding or look up what APS was! That was really comforting (NOT). Just wanted to pass on this info to you since in your case it could be a matter of life and death. Not to worry you, but if you do have APS and it is not treated properly you can continue to clot even if you are on coumadin as your body will still continue to produce the phospholipid/cardioplin/lupus anticoag antibodies. It has to be controlled with specific medications. Keep me posted. Would be curious to hear what your dr.s say.

I will be sure to let you know how it goes Melissa. I joined the APS group today so I'll see you there too!
Julie

I do not have APS so I can't respond to that, but I have ANA negative lupus. More definitive tests for lupus are positive. It's definitely possible to have ANA negative lupus, but it is not common. The negative/borderline ANS delayed my diagnosis by years.

I also have asthma and it was pretty severe in the beginning. It has gotten alot milder and is controlled pretty much with Symbicort. Have you gotten tested for Sarcoidosis, and other ai issues that involve the lungs? I would also get an ANCA panel for Churg Strauss, and Wegeners. Just to be on the safe side. These are rare diseases much rarer than Lupus but asthma is one of the main symptoms of Churg Strauss. I know Lupus can cause lung inflammation as well.

ps Plaquenil over time can reduce lung inflammation as well

Wow! My husband said definitely ask for the referral. He will take time off work to go with me. We've been married for almost 19 years, so he can fill in whatever I forget about my health :-). I was wondering if asthma and allergies are related, since they are AI problems also. I keep adding things to my list as I think of them. It sure would be nice to take medications that work!