View Full Version : Tested positive for Lupus Anticoagulation- doc thinks not

06-18-2008, 10:22 AM
Sorry this long but I do not know what to do.My dad had a stroke and he tested postive for Lupus Anticoagulation- he is now on a blood thinner and they believe this caused his stroke. so when I went to my OBGYN, I am on the pill, she asked about new family history and I told her. She had me tested immediately and it is positive. My primary is annoyed. He didn't want to test further. He said she opened a can of worms and it is probably a false positive. But I have been seeing him for severe headaches- I was diagnosed with cluster headaches but the meds do not work. I have seen him for back pain, neck pain, paralysis (we think this was caused by high potassium at one point 6.5- which he did nothing about becuse he assumed it was a mistake and then for several months I still tested between 5.6-6.0). I have alo seen him for problems focusing, concentrating, extreme fatgiue. I also have problems at night where my knees or elbows get really painful and it hurts to straighten them or move. Sometimes I need to put blankets between my knees, it is awful pain. I also had a few periods where my lower back was in extreme pain for months, I couldn't walk on my feet in the morning withouth being in severe pain for the first hour or so. Sometimes I notice more clumps of hair falling out when I brush it, more than usual. I call it shedding. I also had seen him for dizziness and my heart felt like it was beating out of my chest- he did and EKG at that point because he was concerned my potassium, which he did nothing about may have effected my heart. My arms, legs and feet sometimes tingle or get weak or like right now, my foot is numb. I walk on it and I feel like I have something stuck to it because the middle to heal can feel the coldness of the floor but the front part can't. I went to the ER the other night because I was in so much pain from my headache and my pulse was 104 and my blood pressue was 156/96 (2 weeks ago it was 122/79) but I ended up leaving after waiting for hours, only to find out the nurse thought she had done blood tests on me and when she realized she didn't she said it was at least another 2 hours before I could see a doc because they would wait for blood tests. The EKG was normal but I had pain in my chest shooting to my back. But my head is awful! I have had a CTA- I have a slight bulge in my circle of willis, but they say it is no concern. Anyone ever experience this? My doctor told me yesterday after he finally decided to order more blood work to sort out this Lupus Positive test that I seemed edgy with all this. He seemed very confused as to why I was annoyed that it took him over a week to order more blood work.. I am on the pill!!! He asked me if I ever had a clot before, I said No, not yet.... Does he want to wait until I do to deicde if further testing is required? Am I going crazy? I can't take the headaches. everyone is sick of me saying I am tired, my head hurts, my back hurts, my foot is tingling or my hip hurts. I asked him for something for the headache pain, he said no, he doesn't know what the ER gave me- which was nothing. He then told me to call my neurologist about the headache pain, but said she might not do anything until the blood work comes back regarding the Lupus test. She says to just keep taking the meds she gave me, it doesn't sound like a cluster headache though cause those are seasonal. Any help or suggestion I will appreciate!

06-18-2008, 11:23 AM
Hi JenfromBill -
So sorry youve been experiencing so many unexplained symptoms - it is very frustrating to have people (including docs) not take you seriously - we have all experienced that here at one time or another. It sounds like your GP is an idiot - simply by the statement that determining whether you have lupus or not is "opening a can of worms". What the heck does that mean? It sounds as if your OB/GYN is the only one that has a clue. Can you call her office for help? In the meantime, I would try to find another GP.
Sometimes, when we are branded "edgy" or "emotional" , hypochondriac - type stuff, the docs never change their minds. If the blood work comes back positive for lupus, or any other autoimmune disease, make sure your GP gives you an immediate referral to a rheumatologist - a specialist in this area. Certainly, your symptoms could be from lupus, but it doesnt sound as though even if you DO get a Dx of lupus, that your GP is going to give it the appropriate attention it needs. Time to move on...
We've all been there, Jen, unfortunately, this world is full of "doctors" who either dont KNOW enough about lupus, or dont want to BOTHER. Its sad, but true. Do yorself a favor and find someone who has your best interest at heart.
Take care of yourself until then - try staying out of the sun to see if it provides you any relief from the headaches -

06-18-2008, 02:34 PM
My doctor is much like yours. He didn't really want to do the testing, told me women often have these symptoms due to stress and it will probably go away, yadda yadda. But I insisted, and the results were BAD. Rather than tell me that, he diagnosed me with a "pre-lupus" state, stuck me on anti-inflamatories and made me beg for pain pills so I could walk again. Fast forward to 6 months later, I get put on prednisone for a bad reaction to a Sulfa drug he gave me trying to clear up my nose sores. Reruns my blood work while I'm on it and of course everything comes back much better than before so according to him I'm doing much better. Hubby gets very angry with the doctor (he wanted me to insist on seeing a specialist as soon as my first round of testing was done as we know my doc is an idiot) and 2 days later I call and insist on going to a Rheumy. I had to call 3 times before they finally made me an appointment.

The moral of this story is, if you don't want to get stuck like you are now for the next 6 months to a year, insist on seeing a Rheumy, call and make an appointment with one, or call your GYN office and have them make the referal.

06-19-2008, 04:08 AM
Thank you. I do not understand some doctors. My OBGYN is female, I hate to say this but she listens to me because she can relate and my doctor just thinks I am an over nersvous female? I am shocked at how he was. The sad part is I have been on bc pills for over 10 years so even if it is not Lupus, he should be concerned with my blood clotting and want more tests done. I called a rhumetologist (sp?) on my own yesterday. I had a friend who is diagnosed probable MS- she called her neurologist because her ENT suggested she do so, during an exam she showed neurological problems and failed some tests- her neurologist told her not to call again until she had an ongoing relationship with a psychatrist (sp?). The nerve of him.

06-19-2008, 04:30 AM
Wow that is shocking that the Neurologist would tell her that. You know though there are some real idiots out there practicing or shall I say pretending to practice medicine. Years ago I told a Neurologist off big time, because he started like mocking me and asking questions as if I were asking the questions. I have degenerative disc disease and he flat out missed it. Go figure. I told him that he was wasting my time and I was wasting his time and that I never wanted to have the misfortune of ever seeing him again. I told him that he should take that degree he has haning on the wall and throw it away, because it was not worth the amount of paper it takes to wipe your butt with. He ordered me to leave the office and to never call him again. I told him that I would call a real doctor next time. I left before he could call the cops, or at least I think he would. Like I said though there are real idiots out there that should not even have a liscence to practice medicine. I would call that stupid doctor and insist on a referral to a good Rheumatologist as soon as possible, and if he would not, then you should call the GYN doctor and have them give you a referral. Good luck and I hope they can figure out what is happening with you.

God Bless

07-28-2008, 09:28 AM
I know this thread is from last month, but I just have to say something. I am a medical assistant in one of those stupid doctors offices... or I was anyway (now in nursing school.) And let me tell you, it's not always the doctors' fault. The MAs have a tremendous influence on how much contact you have with your doctor. If the MA doesn't make your problem HER problem, good luck getting that message to the doctor. If you find a good nurse's aid/medical assistant - get their name. Ask for them every time. This is the absolute BEST way to get in touch with your doctor and have the doctor get back to you in a timely manner. Yes, sometimes the doctor is just an idiot.... many doctors are just idiots. Just like some plumbers, lawyers, and accountants are just plain idiots. You have to find a good one that pays for the good help. Because a 9 dollar and hour MA is NOT the same as a 15 dollar an hour MA no matter how you look at it. If a doctor wants their staff saying "I don't get paid enough to do this..." Then by all means, hire that $9 nurse. If they want quality, attentiveness, and devotion to their patients... PAY UP! LOL. Just wanted to add the idea that it's not always the doctor that's dropping the ball. So you don't have to necessarily leave that good doctor because the help stinks. Tell the doctor your issues with the staff and you might just have a better experience next time. Good luck to all in finding non-idiot doctors with well paid staff! :D

07-28-2008, 04:36 PM
That was excellent advice and a new perspective. Thanks


09-23-2008, 03:50 AM
I feel really sorry for you ive been through the same my headaches have been permient for years now last year it was so bad i was in hospital as a in patient for days they an tests and told me it was tenstion headaches.
A year later i see a nerologist who told me its is all in my head and i am deppresed now turns out i have lupus sle and lupus anticougulant.
All i can say is dont take any rubbish from your med docs they are there for a reason to help not to make your feel worse!!!!