I don't understand what this means

General
1

Saw a consultant this morning who said all tests for Lupus have come back Negative (ANA being 40%) EXCEPT my Lupus Anticoagulant which has now come back 3 times positive and this 5th time was inconclusive.
He has told me I have Fibro Myalgia and as I have Chronic Fatigue and Chronic Fatigue is ME…but he said it could be ME and FM or FM and ME - ‘‘does it really matter what it’s called. Labels mean NOTHING’’. He would not diagnose ME though even though he told me I had it. I have no idea why. He was very, very shitty and pissy with me and my husband whole way through.

He has retaken the Lupus Anticoagulant - WHY?? I don’t have Lupus according to him so why should that test matter??

He has told me to come back in 3 mths and see whether the Lupus Anti Coagulant in Positive or not. If it IS he’ll discharge me back into the care of my GP who’ll ‘prob put me on blood thinners’ and if it comes back Negative he’ll discharge me back into the care of my GP who will have to find another route to work out what is causing symptoms not covered by FM and ME. So either way I’ll be discharged after waiting for 2yrs and having 1 x 20 min and 1 x 10 min (today) appoinments.

When I asked about tests that come back negative now can come back positive in the future (classic example being my liver func which is constantly up and down) he said that he didn’t care about what tests would say in the future he could only treat me in the here and now. And apart from the FM and ME I’m apparently totally fine!

I am scared and frightened and don’t understand what he was talking about but he wouldn’t take the time to explain because he was ‘‘very busy’’ and had ‘‘sick people to look after’’.

I guess that’s put me in my place and it seems my place is not here.
Thank you for all of your support through my short journey with you. I have appreciated everyone who took the time to read and answer my questions or offer support. You have def been much nicer than the Dr, that’s for damn sure!!

Oh some good news…I am no longer severely Vit D deficient. Yay!

2

Hello Ellie,

Your Negative (ANA being 40%) means there's no signs of Lupus/SLE with your titer reading but how many times as he actually tested your ANA because members can go for quite a while with it showing ok, then out the blue it shows positive

Regarding your Lupus Anticoagulant coming back positive, he's re-checking you for Antiphospholipod Anitibodies regarding for blood clotting (DVT) etc...as i have Antiphospholipod syndrome known as (Hughes syndrome)...this link explains alot about the test plus it's how high your titer reading was showing.

http://labtestsonline.org/understanding/analytes/lupus-anticoagulan...

So even if it comes back negative he's still making sure your GP puts you on blood thinners...that's to cover himself how convinent and it will most likely be Baby asprin of 75mg to keep your blood thinned out...unless your GP puts you on something stronger.

Ellie i'm sorry to say his attitude STINKS and i'd go for a second opinion because what you stated to him was totally correct about the future and tests coming in proberly positive because if you are Lupus related....Lupus fluctuates our bloods anyway and can give off false readings, this is what annoys me about some Rheumo's their attitude is totally bad for the proffession they're in.

I am pleased about your Vitamin D "Nice one mate"

My 1st rheumo add this same attitude and the last time i saw him, he was contradicting me bad, so i had some right words with him and told him never mind your other 5 patients to see, you can see them when i've asked you some questions.

Ellie don't and i mean don't let any doctor fob you off, like your a pain in the backside...stand up for your rights.

Love you loads mate and we're all here for you. ((Hugs Terri)) xxx

3

Ellie

I agree with Terri, and is what I was thinking when I read your post. Get a second opinion, because this doctor is a jerk. You always have a place here with us! Trisha

4

Hi Trisha,

I've never known anything so discusting in all my life and that's any easy option out saying Ellie as fibro just because the ANA as come back negative...sometimes you have to persist with other doctor's till you drop on the right one :)

Trisha said:

Ellie

I agree with Terri, and is what I was thinking when I read your post. Get a second opinion, because this doctor is a jerk. You always have a place here with us! Trisha

5

Hi Guys,

You lot are great for the soul I'll tell you that much. Unfortunatley I'm in the UK and can't see another Rheumy DR for a second opinion coz you et what you're given. You could theoretically ask for a second opinion but you def wouldn't get one.

Also, he is a Consultant in our National Hospital for Rhuematic Diseases. People travel from all over the country to be seen by these guys. They are the best of the best.

I know things may change, so does he but he doesn't care and specifically said ''We're not going to test you once a year just in case it comes back positive in 3 years!'' and ''They may be able to request it whenever they want in America but that's not how it works here.''

All of my symptoms suggest Lupus but my bloods, at the moment, don't concour. I am kind of stuck.

6

Hi Ellie,

I'm from the UK and you can get a 2nd opinion even if you have to travel to another hospital or the same one again...you see your GP and if he/she is understandable like mine then your soon refered again.

I don't know who's said this to you but get to your doctor's and ask to be sent to another specialist but in the meantime here's a link for the UK for the (Citizens advice bureau) plus ring them because as you know they help us.

http://www.adviceguide.org.uk/england/healthcare_e/healthcare_nhs_h...

When i had that disagreement with my rheumo he told me to get a 2nd opinion i asked my GP and he said if i wanted but at another hospital but instead my Dermo took it in his own hands disgusted with the lot and wrote to the rheumo.... saying he was refering me on and bingo...not long after another rheumo in the same department.

Ellie don't think your stuck...push things furthur, after nearly 28yrs in the system i don't stand for nonsense now and i go above them.

If your unhappy do the same. :)

7

Have you ever been tested for Sjogrens Disease? It has a lot of the same symptoms. I was diagnosed with both lupus and sjogrens on the same day because my Rheumatologist checked for both. I was seeing her for fibromyalgia.

8

I agree!!! He does sound nasty and definitely fight for a second opinion. Just because you have not been labeled with lupus you are always welcome here. Sometimes it takes forever to get a diagnosis which does not mean you are not symptomatic. Anytime you feel something or have a question feel free to check in. Good luck!!!

9

Hello footballmom,

I said the same it could be sjogren's :)

If you'd also like furthur inforamtion on the disease...we have a seperate site you can join.

www.sjogrenssyndromesupport.org

Terri xxx

footballmom said:

Have you ever been tested for Sjogrens Disease? It has a lot of the same symptoms. I was diagnosed with both lupus and sjogrens on the same day because my Rheumatologist checked for both. I was seeing her for fibromyalgia.

10

Ellie-

:-( terri is right on the money for as a far that goes. So, I live in the states. Care is a lot different here. When my Dr told me about lupus, I researched medical journals and published studies. In that that light, I had a cardiac work up and a liver biopsy. Then and only then, with DNA and those 2 things, did he dx me with lupus.

To be honset, I don't think I could have gone through anymore pain and craziness and live. God sent me to the right Dr. !

I hate when Dr's think that they are God's. So, sorry. You are sick, really. REALLY YOU ARE SICK.

Keep at it. Keep reading on line about Lupus, labs, and body systems. Dr's will take some time to explain things even if you know just a little information.

Hope you ok and good health has found you :-)

11

Hi Queenie,

Thank you for your lovely comment and imput for Ellie :)

Queenie said:

I agree!!! He does sound nasty and definitely fight for a second opinion. Just because you have not been labeled with lupus you are always welcome here. Sometimes it takes forever to get a diagnosis which does not mean you are not symptomatic. Anytime you feel something or have a question feel free to check in. Good luck!!!!!
12

Awe Honey dont give up. In the last twenty plus years I have come across a few doctors like that and all I can say is NEXT. I understand things are different in the UK health care wise but good care is good care and since many blood tests for lupus is effected by the time between when the blood is taken and the test ran you can get whats called a false negative. I agree with Terri take it a step higher you are worth fighting for. And we are always here for you. God Bless

Julie

13

I had the same experiences when I was attempting to get a diagnosis. Titers may be negative unless you are in a flare. I too have ASP. I so agree with you about this doctor's attitude. I would call the insurance company and make sure he didn't bill them for an extended consult. My doctor actually has the lab check the appearance of my blood, not for the clotting but for the inflammation. I take steroids and blood thinners, unfortunately I have the heparin antigen and cannot receive the infusions. I clot even when my d-dimer is just slightly elevated. Auto-immune is crazy and different for everyone. Thanks for letting me share. You are so positive!



Tez_20 said:

Hello Ellie,

Your Negative (ANA being 40%) means there's no signs of Lupus/SLE with your titer reading but how many times as he actually tested your ANA because members can go for quite a while with it showing ok, then out the blue it shows positive

Regarding your Lupus Anticoagulant coming back positive, he's re-checking you for Antiphospholipod Anitibodies regarding for blood clotting (DVT) etc...as i have Antiphospholipod syndrome known as (Hughes syndrome)...this link explains alot about the test plus it's how high your titer reading was showing.

http://labtestsonline.org/understanding/analytes/lupus-anticoagulan...

So even if it comes back negative he's still making sure your GP puts you on blood thinners...that's to cover himself how convinent and it will most likely be Baby asprin of 75mg to keep your blood thinned out...unless your GP puts you on something stronger.

Ellie i'm sorry to say his attitude STINKS and i'd go for a second opinion because what you stated to him was totally correct about the future and tests coming in proberly positive because if you are Lupus related....Lupus fluctuates our bloods anyway and can give off false readings, this is what annoys me about some Rheumo's their attitude is totally bad for the proffession they're in.

I am pleased about your Vitamin D "Nice one mate"

My 1st rheumo add this same attitude and the last time i saw him, he was contradicting me bad, so i had some right words with him and told him never mind your other 5 patients to see, you can see them when i've asked you some questions.

Ellie don't and i mean don't let any doctor fob you off, like your a pain in the backside...stand up for your rights.

Love you loads mate and we're all here for you. ((Hugs Terri)) xxx

14

You are your own best advocate when it comes to dealing with such an unprofessional Dr. I hope you find a professional, knowledgeable Dr. with compassion who works well as part of your team! ((Hugs)) Donna

15

Here is a link all about the ANA and testing of it. It is clinical but actually kind of interesting.

For example if you consistently have positive ANA than SLE is the most likely disease but if it is only positive 20-60% of the time than most likely disease can be Raynaud phenomenon. Of course other factors still help determine what disease it is.

As to Lupus Anticoagulant, I went to wiki and read up about it..by the way, wiki is excellent source for a lot of medical tests, diseases etc. Here is that link and explains it in layman's terms which is nice. http://en.wikipedia.org/wiki/Lupus_anticoagulant. I get about the Lupus Anticoagulant test and his replies. Read wiki will explain it so it should make sense to you his answer both if it is positive or not. If it is positive try to get ultra sound done on both your legs where they look for a clot. If you are positive it is possible you might have a clot and most likely place is in your legs. They should check in other places as well.

Okay..i read that is a Rheumatologist that you have waited 2 years to see. I cannot believe that if they seriously thought you have SLE, they would have you wait 2 years for such a arrogant jerk! So it sounds like they believe you have Fibromyalgia and Chronic Fatigue. I do not know what you mean by ME.

As to your liver test that has been high that low, i bring it up again. If he says again he is not worried about test for the future, come back at him with, I waited 2 years to see you and did not take the time to read my chart and get familiar with all my lab work? If not than look now and you can see how it has gone up and down. I am very worried about what can be causing it to go up and down. Please, look in my chart and give me your opinion.

I also position your husband so he has his back to the door right behind him. Ask your husband to tell this Doctor what he has observed about your health and how it affects him. etc. Since your husband is blocking the door, this guy will not be able to sneak out but stay and answer all your questions. Like about your liver, could it be another auto immune disease in his opinion and if yes than which one? What GP doctor would he recommend? if you were his wife than what tests, diets, supplements or alternative treatments would he have her take?

Also...I personally do not think it right to treat another person as he has treated both you and your husband. If he does it again, I ask for his name and his bosses name at the end of the appointment. Than i file a formal complaint to his boss.

It sounds like you are in the same boat I was in when I first was diagnosed with Lupus. There just were not any Rheumatologist around. My Internist who was my main doctor as well told her husband how hard a time we had in finding me one. So he went back to college to get his specialty in it. He than became my Rheumatologist after my first one retired....i think when i started to see him he was in his 60's! He was wonderful though! My point is...hopefully over there they realize how they did to do some incentive for doctors to become Rheum!

The Rheumatologist you are seeing if you must wait 2 years....must just be working constantly. What do they do if you have serious complications like lupus with kidney involvement? Silent but rob you of your kidney if goes untreated'? do they make them wait 1 year?

I sincerely hope that this appointment goes better...if need be, remember to put your husband by the exit door and do not let him move till this doctor answers all your questions so you fully understand. i wish you best of luck....and read the links...plus remember there are many, many autoimmune diseases ...plus all the other kinds. If he thinks you do not have lupus...ask what specialist he thinks you should go see now? might not even be auto immune..never know. good luck! hope the links help

16

Thank you everyone. You are all so lovely in taking the time to read and then answer my queries. I really appreciate it. More than you know.

Ellie xxx

17

I'm so confused - I wrote a reply to you guys last night and posted it here and yet it has now disappeared!! God knows what happened. I told you about loads of important stuff which I have now forgotten exceot the fact that he did diagnose me with Psoriasis. He looked at my nails and the back of my scalp and behind my ears and said ''You know you have Psoriasis?'' That was it, nothing else.

Crap, I wish I knew where my other post went!

18

Hello Ellie,

Your welcome from us all and we all need full support which is a hugs encouragement where Lupus is concerned.

Ellie sometimes messages just disappear out the blue not often but it does happen and i do suggest if it's long again copy it incase it does'nt show then re-paste it.

Oh so he did diagnose you with psoriasis which i also have which as led to DLE and if you've got issues going on which he definitely saw...WHY AGAIN did'nt he treat you with either some cream or steriod cream which soon helps psoriasis.

Ellie which other post are you refering to?...love Terri xxx

19

I have been through this same thing with my blood work over and over. Lupus is a hard thing to completely understand I get my blood work every three months and I see some highs and some lows and some within normal limits Its hard because I to am scared but I put on the brave face in front of my family and children, I do know this no blood test or any test can tell my doctors how im feeling or the amount of pain I go through on a daily bases. I pray that our doctors will hear us and I pray for a cure it's sad but in a 3 month period I only have 1 day were my pain is not as bad. keep going to your doctor and I will keep you in my prayers

20

Hello godsgirl,

Thank you so much for your imput as it helps Ellie besides other members.

I do hope and pray that a diagnosis came come your way also to be treated.

hugging emoticonTerri xxx

http://cdn.mdjunction.com/components/com_joomlaboard/uploaded/images/Lil_Angel-800e0b29ba463ca8f3e7a54a6a6e9d9e.gif

godsgirl66 said:

I have been through this same thing with my blood work over and over. Lupus is a hard thing to completely understand I get my blood work every three months and I see some highs and some lows and some within normal limits Its hard because I to am scared but I put on the brave face in front of my family and children, I do know this no blood test or any test can tell my doctors how im feeling or the amount of pain I go through on a daily bases. I pray that our doctors will hear us and I pray for a cure it's sad but in a 3 month period I only have 1 day were my pain is not as bad. keep going to your doctor and I will keep you in my prayers