Now I'm not worried I'm really scared

I have been diagnosed with FM and was tested for Lupus 3 mths ago. I am seeing the Consultant again tomorrow morning (UK) and need to know what tests I need to look at and whether they would need to be high or low to indicate Lupus.

Please is there anyone that could give me the names of the tests for Lupus (apart from ANA) that would have been done and whether they would be high or low if I had Lupus.

I am frightened if I don't know get this info before I go I will get all confused and he'll just say that the diagnosis for Fibro stands but as ANA came back neg (it came back positive whilst I was pregnant 3 mths before) I don't have Lupus. ''Now run along I have sick people to deal with'' - do you know what I mean.

Is there anything else I need to ask about I have had chronic fatigue and pain for over 18 mths. My vit d levels were very, very low. Almost none existant. I am now recieving massive doses of Vit D daily. I have pains in my joints, head, heart, lungs and upper right quadrant of abdomen. My hair is falling out in spades.....the list goes on.

I'm scared because I know something is not right and I'm worried that if I don't ask the right questions tomorrow and tell him the right things I will be discharged. It took me over a year to be referred so that just CAN'T happen.

Please, please, please help me if you can.

Ellie x

Other tests that will be positive are your ESR sed rate, and CRP level. Also, they should do a rheumatoid factor to rule out rheumatoid arthritis. Also, if you have a very low vit. d level it can affect your body immensely. Good luck!! Keep me posted!!

Hi Ellie,

Instead of adding a link...i'm adding all this info and it's the tests run for checking Lupus as i went through quite alot to be diagnosed and i really hope you get some answers tomorrow and please update we besides.

Love Terri xxx

Ellie,

I've added a discussion on all tests down for confirming Lupus to help yourself besides other members who need to know and when you've add your rsults tomorrow still ask for a print off, of them as your entilted to them.

Best of luck :) xxx

So, the problem with firm answers to your questions are that everybody’s positive lupus indicators are different. Some have more symptomatic indicators and are fortunate to have doctors who believe them rather than being a stickler for labs that are known to fluctuate. Many good doctors operate under once-positive always-positive for certain key, specific tests like anti-dsDNA and anti-Smith antibodies. If either of those is positive and you have several of the ACR list of symptoms, it is lupus even without a positive ANA that is normally (and stupidly) used as the gateway test (it’s known to be fickle and positive for a variety of other reasons aside from lupus, but it makes sense to look at along WITH a full panel!) Really, though, all your labs can look totally normal at a snapshot point and you still have lupus. Any decent rheumatologist knows it may take years of continued tracking, and ruling it out by one round of negative tests (without a CLEAR way ALL symptoms are explained by other valid diagnoses) is not only foolish but bad medicine!

That said, here is the run down of key ones off the top of my head, listing what values may INDICATE lupus to varying degrees (though are not all needed to make it true!):

Very specific to lupus (if these are positive and he tries to doubt lupus, get a new doctor entirely!):
Positive for anti-dsDNA
Positive for anti-Smith

Less specific but common in lupus:
Positive ANA (where different patterns may help indicate different autoimmune conditions that all can cause these)
LOW levels of Complement (C3 and C4, more likely to be true during high disease activity)
LOW platelets, RBCs or WBCs (blood counts)
SLOW Sed Rate (ESR), which means a HIGH number (the number is time, slow rate takes a longer time)

Indicate related autoimmune conditions (positive means indicative for that disease but also maybe part of lupus):
Anti-SSA/SSB–sjogrens
Anti-Histone–drug-induced form of lupus
Rheumatoid Factor (RF)–RA
C-reactive protein (CRP)–myosotis/dermatomyositis
Anti-phospholipid antibodies (cardiolopin IGA, IGG and IGM)–anti-phospholipid syndrome (often a part of lupus, usually not stand-alone)
Anti-Thyroid antibodies–autoimmune thyroid disease

A good doctor cares about keeping mildly-ill patients as WELL as POSSIBLE, so a doctor who wants to send you packing due to not-big-enough problems is being negligent. Unfortunately, the standard for medical action is not whether you feel bad or unlike your usual self, but whether it impairs your ability to WORK (after all, we are no more than our productivity in a capitalistic model… Bad enough in the US, but I’m not surprised if that benchmark is even stronger in nations where the disabled ARE actually helped by the government, because they don’t want to spend money!) Again, a good doc will try to keep you healthy and get that work score improved, while only a slightly evil/corrupt/plain mistrusting doctor will minimize your complaints to make you ineligible for such support. Some will think you’re over-worried about small symptoms, but anxiety itself can be from lupus!

Be clear about symptoms/level of impairment, not only because they can diagnose lupus, but need to be addressed somehow even if not as lupus. If clues point to lupus vs. mystery, lupus is probably it. If the clues point to something other than lupus, and that covers all symptoms, it’s probably not lupus and is THE OTHER THING, not just nothing. If the clues are vague and maybe due to vitamin levels, that should get resolved first to see if it helps (lupus drugs themselves are quite nasty), but if not, RE-CHECK for lupus.

Since this rheumatologist was hard to get in with, before you leave ASK HOW you will get re-checked when symptoms flare up (impt to go WHEN active so you catch it!) which can probably be ordered by your primary under the rheumatologist’s guidance on what to test when, then follow up with the specialist in case of certain pre-discussed results, etc.

Good luck!

here is a link from Lupus foundation of America...one of it not the best place to go for information. the links is on how to diagnose lupus. http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2239&zoneid=524

It will answer all your questions. WRITE THEM DOWN BEFORE..do not leave till doctor answers all your questions. Remember this...if you were buying a car, appliance, etc you would want the sales person to answer all your questions, right?! look at your doctor like that...it helps. It is not your problem if he over books to be greedy. In this link it will tell you how to prepare for your doctor visit.

Also remember this...most people with lupus live long okay lives. Like having diabetes. Try not to make it sound scarier than it is. Plus, now...at least they are making head way even had our own drugs finally!!

I wish you the best! If you think need help to be assertive with the doctor bring some one with you who will not. as one doc here on show would say..grab them by stethoscope do not let go until they answer all your questions. Yes might act irritated but it is his greedy problem for not scheduling a long enough..keep thinking that! best of luck and hope it goes well also most test if not all do not hurt ..mainly blood. that is it.

Hi Ellie,

Here's the discussion i added yesterday for members who are'nt sure on what bloods and tests are run for a diagnosis of Lupus and i hope it helps :)

http://forum.lifewithlupus.org/forum/topics/bloods-tests-done-for-confirming-lupus-for-members-who-are-not

thanks so much for sharing

It was No Go with the Dr. He basically told me to go away as he was ''very busy'' with ''looking after sick people'' and that he didn't have time to answer my questions.

See my lastest update.....

Thanks for all replies, it makes a real difference when people don't just read, they answer.

Ellie xxx

I think everyone has done a really good job of answering your questions so I just wanted to let you know we all share in your fear and frustration. I hope your appointment goes well and you get the answers you want and so deserve. This is an awesome site because no matter the situation or question there is always someone willing to listen and who most importantly, understands. If nothing else you will always find some much needed sympathy which sometimes is all we need ( and a safe place to vent :wink: ) Good luck!!! Let us know how it goes. Thinking of all of you :wink:

Hi Ellie,

I am sorry about your situation and the terrible attitude with your DR but i would still push furthur by getting intouch with the "CITIZENS ADVICE BUREAU" and look into where you really stand with this, as you can't keep being fobbed off and like Julie stated so many members go through your situation daily.

Best of luck Terri :)

EllieL said:

It was No Go with the Dr. He basically told me to go away as he was ''very busy'' with ''looking after sick people'' and that he didn't have time to answer my questions.

See my lastest update.....

Thanks for all replies, it makes a real difference when people don't just read, they answer.

Ellie xxx

I am sorry to hear it!!! So many docs and there egos are useless. If they don’t know then its nothing and they become dismissive and condescending. How about just admit you don’t know and send people to someone who might!! There is nothing more frustrating than being given the brush off. Don’t let it stop you!! You and your health are too important!!! There are some great docs out there it just sucks weeding through the bad to get to the good!! Good luck!!

Is it possible for you to find another doctor? There are other tests besides ANA. There are certain tests the better rheumatologists run. My new doc said after the last blood tests that my double-stranded DNA is high and complement levels are low, which is consistent with definite activity of lupus. As a result, she had to become more aggressive with the treatment than previous doctors had been. I’ve gotten into such deplorable condition that she is now intervening to try to give me some quality of life back. That’s why I’m not on here too much. I work full time and barely have any strength left over for basic things like eating and bathing.

First for vit D are you getting out in sun...not midday but outside for just 20 minutes per day..that is enough to get your Vit D. Lupus Foundation of America, Northern Calif Lupus, Gee I don't look Sick are all non profit lupus sites that also show what tests. There are now 80 auto immune diseases so it is hard for doctors to find which one...and many of same symptoms over lap.

http://www.lupusresearchinstitute.org/about-lupus-research-institute that is lupus research and has how to diagnose it under 'About Lupus' plus links to other lupus sites. Plus it will give you all the tests they do to diagnose it...such as looking for protein in urine. ..the pain in abdomen could be hernia or even just cyst. your hair fall will fall out due to low D so that could answer there.

Do not worry about the ANA..like i said there are 80 auto immune disease! plus all the others out there..just let your doctor run tests that will cover most diseases right now. Sedimentation Rate is one he should do to check for RA...be about 4 vials of blood and urine tests is what he should be doing. Also ultra sound for pain abdomen.

you hair also can just fall out due to stress and since you sound so scared it could be that. I have learned to look at now news is good news! seriously! Plus a positive sign is you were pregant and sounds like it was normal one. I never could carry to term....many women with lupus cannot or have to abort in last trimester to save their lives..So not disease one would want.

Need to talk to English person on here to find how to get new doctor in your case.

But please try and relax....worry is not going to get you anywhere...breath deep breaths, calm music, read or watch movie anything that can take you mind off it.

I hope it turns out with easy fixes for it all....nothing serious. GOOD LUCk...check the link out

It was not a normal pregnancy at all. I was in hospital for 7 mths and it ended with a Premature Emergency C'Sect and both me and my baby boy in Intensive Care. Baby on respirator and in an induced coma and double chest drains plus several other in and outs on his tiny body. It was horrific and the scariest time in my whole life.

Also, hair was falling out before I was even remotley stressed along with the butterfly rash etc etc.

Hello Ellie,

My god mate it must have been one scary moment for you especially with all that happening to your child besides issues hitting yourself.

All i can say is how life can be so cruel at times and i really do feel for you and what you went through.

big hug smiley face emoticonTerri xxx

EllieL said:

It was not a normal pregnancy at all. I was in hospital for 7 mths and it ended with a Premature Emergency C'Sect and both me and my baby boy in Intensive Care. Baby on respirator and in an induced coma and double chest drains plus several other in and outs on his tiny body. It was horrific and the scariest time in my whole life.

Also, hair was falling out before I was even remotley stressed along with the butterfly rash etc etc.