[mikandbor]

Hi,
Some background on me: I am recently 40, have had migraines since childhood, suffered 4 miscarriages and a stillbirth (was put on prednisone - clue?) and had two full term children afterwards. In 2005 I had a period of six months where I had transient High fevers followed by joint swelling, lesions on my hands, feet and in my mouth, extreme fatigue and muscle pain - lab tests high were sed rate and C-reactive proteins, I was placed on High doses of prednisone and eventually tapered off. No one figured out what was going on then - kept telling me a viral syndrome. Last summer I developed out of the blue 5 pulmonary embolisms was treated etc...recently (I am a RN) I have had worsening headaches (more frequent, more severe), ringing in my ears, fatigue, transient joint swelling this time in my hands and feet, and cognitive issues. My PCP sent me to a neurologist two weeks ago and since my labs also come to my office where I work - I found out my Lupus Anticoagulants today were greater than 200. I was really thinking I may have MS so this has thrown me for a loop although having had several rounds with prednisone with great success - the neurologist said "very interesting" when we went through my history with the miscarraiges and the prednisone working. I still have other tests to do before I go back to the Neuro including a MRI, an EEG, and an EMG so none of this is for sure I suppose but has anyone out there backed into a Lupus diagnosis and was what I went through in 2005 perhaps a "flare". I am feel like a complete idiot being a nurse and all - but they say we are the worst patients. Looking forward to some replies. Kimberly

 

[Nutty]

Hi Kimberly,

Sorry to hear that you are so frustrated. You may put a little more pressure on yourself because you are a nurse, but I know many people who have waiting years to get a proper diagnosis. It's really a matter of finding the right doctor that will listen to you. Looks like you may have found that doctor now. I sure hope so. Also, because we generally figure out that we have SLE before the doctor, we are anxious to get the right diagnosis. As much as we don't want SLE, we don't want to feel like we are crazy and all this stuff (symptoms)is in our head.

It certainly sounds like you have a lot of symtoms for Lupus. I've only experienced the blood clots and serasitis and I get the malar rash sometimes. But I read about lots of people here having similar systems to yours.

Again, don't be hard on yourself becaue of your profession because we ALL have wait for the doctor to call it. You just have a heart start on most of us in recognizing what we have, which can make it more frustrating for you.

Good luck and do hang in there. Like I said, it looks like this doctor will be promising. I sure hope so for you.

Nutty

 

[mikandbor]

Thanks...

Thank you for your reply. yes I am a little frustrated -mainly because when I was so sick in '05 I did not advocate very well for myself but have lived with this little voice in the back of my mind saying "what if that was not a bad virus but something that went into remission". when my symptoms started to return (morning stiffness especially) I jumped on it and pushed the issue this time. The neurologist at the end of our hour and a half consult specifically said Lupus but I still was mentally stuck on MS. I am anxious to return on the 17th and have this tied together because I have been told stress (when I know I was not under any), and age (hello, since when did turning 40 mean you have to walk on your toes in the morning or cant remember your dogs name for hours) and all other types of nonsense... and of course being a nurse makes me think of all the worst case scenarios. I have to run and go to my MRI now - we live in a very rural area and must drive nearly 2 hours to get it because the neurologist did not want it done at the local little hospital. Thanks again and I am learning so much by reading everyones posts. Kimberly

 

[Maia]

Hopefully the neurologist will eventually refer you to a rheumatologist as that is the best specialist to diagnose an autoimmune disorder when one is suspected. Lupus anticoagulant is associated with a blood clotting disorder known as APS=Anti-Phospholipid Syndrome or Hughes syndrome. APS can also present quite similarly to MS - but improvement is usually achieved when APS is treated (generally with coumadin). It does seem very likely you have APS given your history of miscarriage and stillbirth as well as several pulmonary embolisms. Have you been tested for anti-cardiolipin antibodies as well? Are you on coumadin/warfarin already?

It does sound like lupus is a possibility too given your other symptoms. Lupus "brain fog" is a term we all know and hate! Living in a rural area I also hope you have been tested for the possible tick borne illnesses that may be prevalent where you live. All of the possibilities should be investigated (preferably by a rheumatologist in addition to your neurologist) before you settle on a diagnosis and treatment. Was an ANA run, or any of the other autoimmune blood tests?

Best wishes for a speedy diagnosis now and some very helpful treatment soon. Don't be too hard on yourself, denial is a path we all follow sometimes. I certainly have done that too! Who wouldn't want to think symptoms are due to some pesky virus especially when a doctor says so!?

 

[mikandbor]

Hi,

Thank you too for your reply...Yes I have been tested for the anticardiolipins both last year when I got the blood clots in my lungs and the same time the tests were done this week. I have been on coumadin since the PE's because my PCP is worried about taking me off them since the PE's developed out of nowhere. I aslo take Lipitor because my regular Lipid profile comes out okay but when they are fractionalized out (A VAP profile) they are a "bad pattern". I had an ANA done in 2005 and it was "borderline" right at the cut off. I have not got the ANA back yet that was done this week. In 2005 I saw a rheumatologist, he is the one who put me on the prednisone and sent me to an infectious disease doctor - again nothing came back abnormal except my sed rates, sever anemia, a low white count, and the CRP (heart inflammation - which then got me sent to a cardiologist who did a Transesophageal Echo to look for vegetations). I wonder if some of my testing was done too late then - because my symptoms started in February were at there worst (one morning I could not even get up off the toilet my muscles and joints were so bad and had to knock on the wall for 30 minutes until my kids came and rescued me) in May ( I dragged my non functioning right leg across the stage at my college graduation) and the MRI, ANA, TEE, etc were not done until July through September after I had been on 80mg of Prednisone for months. I will probably not go back to that Rheumy because I only saw him twice in 6 months (he referred me out on the first visit and then followed up after I had tapered off the prednisone in October) and look in Denver for a good one if that is what the neuro recommends. At the very least I will have learned so much more about Lupus through this whole situation - Has anyone had to have an EEG or EMG for Lupus - I understand the EMG but not the EEG as a screening tool in this case.

Thanks so much. Kimberly

 

[Maia]

It does sound like you need a different rheumatologist. Prednisone can certainly cause autoantibody blood tests to go lower/negative. Given the additional information in your last post, lupus does seem a very likely possibility. This makes it even more important to find a good rheumatologist. You can post in the Find a Doctor forum for recommendations from our members.

Sometimes lupus can affect the brain, it is then known as CNS lupus. Lupus can cause siezures and other brain abnormalities; this could be one reason for the EEG being ordered but I'm sure that your doctor has his own reasons for ordering it and of course it's best you ask him at your next follow up visit.

 

[Clare.T]

Hello

I think you should find a rheumatologist who knows about lupus and APS.
The US Antiphospholipid Syndrome association has a list of Lupus specialists recommended by its members. The ACR has a similar list on its website.
I suppose your INR is regularly tested?
I don't know what the anti SL test is but it should be easy to find out what tests are infuenced by being on Coumadin. If a doctor or pharmacist doesn't know then the manufacturers should. I have an idea that the "Lupus anti coagulant" clotting tests can't be done on Coumadin but I don't know about the anti cardiolipin testing.

APS can have a number of similar symptoms to SLE and of course to MS.
If MS remains suspect then its best to see an MS specialist.
The presence of LA and or anticardiolipins can be a criterion for a diagnosis of lupus regardless of ANA ditto high SED rate & low white blood cells.

As far as I know raised CPR isn't regarded as significant in lupus except as an indication of infection causing flares. I don't know anything much about diagnosing cardiac /atherosclerosis problems

That ANA titre isn't significant but if lupus is highly suspect I think many doctors would proceed with other lupus and connective tissue disease tests because the ANA isn't always raised or even present.

It is well worthwhile getting the most expert opinion you possibly can even if it means the trouble and expense of travelling some distance.
There are limits to what one can conclude oneself even if one is medically well informed. This is a highly complex disease

Best of Luck!
Clare