I don't understand what this means

Godsgirl: Thank you so much for your kind words. Your understanding and support makes me feel like I want to give you a great big hug. I'm so sorry you are going through the same thing, I do hope you find answers and beneficial treatment very soon.

You are also in my thoughs and prayers. Stay strong.

Lots of Love,

Ellie x

Amen to that!! A cure sure would be nice along with actually being heard for once!!!
Good luck to all!!

Queenie,

I quite agree with you and what you've stated.

Hugs Terri :)

Queenie said:

Amen to that!! A cure sure would be nice along with actually being heard for once!!!
Good luck to all!!

Bernadine,

You are so right about Doctors that believe they are Gods...they are idiots. Though, to be fair, a few times in my life, having family that work in the medical field, I am often lucky to know who are the better doctors. Few times in my life either family member or one of my best Doctors sent me to one those 'God Doctors' since they were the best for what I needed. As they told me, I will need to assert myself, if I am too sick on day i am seeing them, bring some one that will..if that is not possible, write the questions down, tell him your not leaving till he answers all them till you fully understand the answers and do just that...just do not leave the exam room.

More than once with my last Rheumatologist, since he just walk out of room after 'barking' what i test, etc he wanted me to do. So would not get dressed, wait till his office nurse would come back tell them that he never answered my questions so i am waiting.

He did always come back and answer them....i could tell he did not like but he did! So though it is in a way passive aggressive assertiveness and I rather just be up front...since that did not always work..this did so you do what you must! I hope the appt today went better!

Hope you read my or other links about ANA and other questions. If you are using Google for your search engine, it is decent finding reliable sites if you type in your question. Also here in US, CDC can answer very through easy to understand explanations about tests, diseases also the famous medical hospitals or teaching universities too.

Just made me laugh about doctors who think they are gods lol ! We all should be thankful though, because I can recall in the late 60's early 70's, so many more were like that ..now i do not think there are that many, thankfully!! anyways it just made me laugh lol! thanks

Bernadine said:

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 :-)

thank you for reading what I had to say. if you have been dx. for 5 years or more there is some fight that we are going to have to fight by ourselves. us getting a better understanding on how are body work, what meds do and dont work for us and when we need to slow down and take it easy is important. we must take care of our selves!

EllieL said:

Godsgirl: Thank you so much for your kind words. Your understanding and support makes me feel like I want to give you a great big hug. I'm so sorry you are going through the same thing, I do hope you find answers and beneficial treatment very soon.

You are also in my thoughs and prayers. Stay strong.

Lots of Love,

Ellie x

Hello siskiyousis,

On a previous post you mentioned that the inernet besides google can be totally wrong with their info....not if like you stated you know what should be typed in and what sites are properly resourceful.

Terri :)

Hello Bernadine/other members....who are'nt totally sure about testings on ANA and other tests.

I'm adding this discussion which tells you everything regarding Lupus testing which i've added previous as a Discussion.

http://forum.lifewithlupus.org/forum/topics/bloods-tests-done-for-con...

Hugs to you all Terri xxx

Hello siskiyousis,

Here's a link for you to read which covers all issues on ANA testing.

http://forum.lifewithlupus.org/forum/topics/bloods-tests-done-for-con...

Which does'nt confuse members and is 100% accurate in the fields of testing for Lupus and when members get results they can refer back to it.

Plus you've also stated that if it comes positive 20-60% of the time than most likely disease can be Raynaud phenomenon...that's totally wrong it can be any autoimmune disease the body is carrying, as Raynauds follows on with alot of other autoimmune diseases.

Regarding layman's terms...i have Antiphospholipid Syndrome known as (Hughes Syndrome) besides many more members on the site and Ellie's Anticoagulant test coming back positive means she also as it... as her titer/d'dimer was showing high on the 3 times it came in and by this a specialist can tell by a blood test if you have a clot and also where it's lodging and then your sent for a scan on that area plus the blood test also tells you what clotting system you have, as there are to forms the first is...if a clot moves it goes straight to the heart and can kill you instant which i have and the second..if a clot moves it lodges in the lungs for a while then hits the heart and it's not mostly likely in the leg.

Regarding what does ME mean... (Myalgic Encephalomyelitis) or CFS (Chronic fatigue syndrome)



siskiyousis said:

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