View Full Version : Need advice
03-01-2009, 12:50 AM
Hi , my name is Lily and am very new to this. Well first of all let me tell you about myself. I am 45 yrs. old and have been married for 26 years with 5 children and 3 grandchildren. Everyone started to come down with the flu this week and I had got feeling pretty crummy and went in to see my Dr. He had said that I had walking pneumonia and started me on some meds. Within an hour of getting home I started feeling close to a paralysis state and was having some severe muscle joint pain in only my lower half body. I also had pain only in a centralized spot on my back. I had thought it might be a reaction to my meds so I called the Dr. and he advised me that is was not that and to take the pain reliever he prescribed. This pain lasted severley for three days, but strangely would be so severe for hours especially while laying or sitting down, then would subside for awhile then come back worse. I went in to do blood work and gotten results that " I hope I say this right" my westergrain results were highly elevated. So they made me do the "ana" test and I got the results today and was told it was positive, and had inflammation. So what this all meant to me was weird. The Dr on call seem to focus more on how great my cholesteral was. H then told me results were positive...for " ana" lupus test, but "don't worry" your cholesteral is awesome! Well aint that awesome I told him but tell me about the word Lupus you mentioned. So anyhow he tells me " well do you have rheumatoid arthritis? I told him no, so he replies with well the results are positive but if you don't have a rash I wouldn't worry because the test for it doesn't mean you have it, but if you have concerns try talking to your Dr. about it....well to say that much what am I to think? I don't know what to do, if I leave this alone what will happen and how do I find out if I have it. If anyone can give me any advice on this I will truly appreciate it.....hope to hear from you.....Thank you.
03-01-2009, 04:18 AM
hey I don't really have any advice but just wanted to say welcome and chin up....
03-01-2009, 08:25 AM
Hi and welcome to the site. Just hang in there someone will be here soon to help you. Sending you gentle hugs.
03-01-2009, 12:57 PM
welcome to the forum....this is a great place for answers to your many questions. this discovery process is extremely frustrating and can sometimes last for years. I tested positive for lupus for over 10 years, but did not display enough of the symptoms. Lupus diagnosis requires positive ana, plus at least 4 of the 11 symptoms. When addressing each of the symptoms, be sure and think back.....no all symptoms come and stay. You may have had some in your past, but maybe not present today. It appears to be normal for lupus to include high cholesterol....mine really isn't badly elevated. Also, some drs. seem to focus on just a minimum symptoms....for example if you don't have the malar rash, then they don't think you have lupus.
there are so many people here who can really give you guidance with specific information on blood work, symptoms, etc. Please feel free to stay with us, and ask as many questions as you need to.
03-01-2009, 06:48 PM
HI Lily! Welcome....I am sorry you have not been feeling well.
From what I understand, you have had flu-like symptoms, a high sed rate (westgrain), and a postive ANA. Of course, you should continue to seek the advice of your physicians. A lupus diagnosis is rarely simple or rapid, and should never be based on lab tests alone. The following is based on my experience as a lupus patient, and as a nurse practitioner.
These things alone do not mean you have lupus. There are many other possibilities. The American College of Rheumatology lists 11 specific criteria, of which 4 are needed to secure diagnosis. However, as was mentioned in an earlier post, many physicians interpret these criteria differently. It is possible to have presumptive or probable SLE, without fulfilling 4 criteria. Regardless of how it is classified, patients are often ill or feel ill for quite some time before a diagnosis is obtained.
Are you scheduled for a follow-up visit with your physician? If not, might I suggest an appointment to further discuss a plan that makes you both comfortable.
I wish you the best! Please come back and update us.
sick n tired
03-02-2009, 10:10 AM
Welcome...sorry to hear that you have been feeling so crummy...I just got over pneumonia...yech...
Ok..your doc is right when he says a high Ana does not diagnose you with lupus..but there are many with lupus who do not have rashes. That is one of the criterion but not all. My suggestion is you do as I did when all I had were my symptoms and a high speckled ANA...I made an appointment with a Rheumotologist..I went to two actually. The first was a jerk.
One test that would be nice for you to have whether you go to an actual Rheumotologist or not is a ds DNA test. My rheumy calls that his lupus marker.
03-02-2009, 02:01 PM
Hello and Welcome Lily;
You've already been given some very sound advice by our members here. A positive ANA alone does not indicate Lupus. However, 95% of Lupus patients do have a positive ANA. Also, as was mentioned, not everyone gets or has the Lupus rash, so not having a rash does not preclude Lupus. Also, as was mentioned earlier, there are eleven criteria set forth by the ACR. In order to have a diagnosis of Lupus, you must meet four of the eleven, not all of the eleven. The criteria can be found on these forums in "Newly Diagnosed" and it is a sticky. Making a diagnosis of lupus can be difficult. It may take months or even years for doctors to piece together the symptoms to diagnose Lupus accurately
Many Lupus patients are mistakenly diagnosed with Rheumatoid Arthritis because the inflammation and some of the symptoms are so similar. RA and Lupus are both auto-immune disorders and it is also common to find Lupus patients who also have RA as an over-lapping disease.
I am going to give you a bit of information about the tests that you mentioned:
ANA: The ANA test is a screening test used for several autoimmune diseases. It determines whether auto-anitbodies to cell nuclei are present in your bloodstream. The ANA is currently one of the most sensitive diagnostic tests available for confirming the diagnosis of Lupus, but only when the test is accompanied byother typical clinical findings. Without those findings, however, a positive ANA may mean nothing at all. The ANA test simply provides another clue for the doctor to consider in making a diagnosis. In addition, there are blood tests for individual types of autoantibodies that are more specific to people with lupus, although not all people with lupus test positive for these and not all people with these antibodies have lupus. These antibodies include anti-DNA, anti-Sm, anti-RNP, anti-Ro (SSA), and anti-La (SSB). The doctor may use these antibody tests to help make a diagnosis of lupus.
ESR (erythrocyte sedimentation rate): Other tests that would possibly be used in conjunction with the ANA test and in the presence of inflammation include erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) tests. The SED rate is a marker to show inflammation in the body. An erythrocyte sedimentation rate test, also called an ESR or sed rate test, measures the speed at which red blood cells fall to the bottom of an upright glass test tube. This measurement is important because when abnormal proteins are present in the blood, typically due to inflammation or infection, they cause red blood cells to clump together and sink more quickly.The ESR is useful in detecting inflammation in the body that may be caused by infection, some cancers, and certain autoimmune diseases such as rheumatoid arthritis, lupus, and Kawasaki disease. The ESR alone can't be used to diagnose any one specific disease, however.
If Lupus (or auto-immune disease) is suspected, doctors want to keep an eye on you cholesterol levels in order to minimize the chance of heart disease in Lupus.
As Lilmisssunshine noted, you have a positive ANA, a High Sed Rate and lupus-like symptoms. As such, these could indicate some type of auto-immune disorder. You might be well served to ask for a specialist in auto-immune diseases; a rheumatologist. Often, these doctors are better versed in the criteria for these diseases and are better able to give you answers to some of your questions. But, please know that Lupus is a very, very difficult disease to diagnose because its symptoms resemble so many other diseases and the disease can evolve very slowly. So, you may not get a definitive answer for months and sometimes up to a year. In the meantime, if you are dealing with a caring and knowledgeable rheumatologist, your symptoms will be treated while awaiting a diagnosis so that you can have some relief.
Also, we are here to help you as much as we can.
Peace and Blessings
03-03-2009, 05:44 AM
Hi and welcome to the group. I would recommend that you go see a rheumatologist to confirm the diagnosis. I was first diagnosed with SLE in 2004 after a hospital stay for a blood clot in my lower calf. I went to rheumie and he was a complete quack, he kept asking me the same questions over and over (he wasn't listening) and told me that he didn't think I had Lupus and to come back in 6months. So I wrote it off, still felt bad and didn't find another rheumie until 2007, who ran tons of tests including ANA and then diagnosed me with SLE> My ANA has been negative, then postive and most recently negative. But my symptoms are very real and if you can find a doctor who really understands this and listens to you, that is great! I work in hospital administration and I can tell you that some of the doctors we have out there practicing in this world are unbelievable and very uncaring. It is very discouraging to see a doctor and be treating that way, which makes some people write them off all together! Search for a good rheumie and go.
I just wanted you to know that the test are always different. my ana is postive and negative depending on the lab. i had my blood sent to a special lab that only does test for lupus and other auto immune and they test was postive for all the test they do. so i would go to one of them. and sticke with their results thats what i did and it works for me.
This is a nice forum to be in. good luck and be persient with your docs or change them.
I got my recent blood and urine test results back this morning. doc out of office nurse practionter said i was ok but the lab flag these test results. carbon dioxide 16 low, appearance cloudy abnormal, occult blood abnorma, rbc abnormal 10, epithelial cells non renal abnormal and c-reactive protein 17.3 high. my back has been bothering me for sometime and the meds don't help with pain should i be concern about these test results or not. can anyone help me with this. thanks
still can't figure how to use this forum i tried useing a blog but angela said to post it somewhere else for help. i can't figure this out but i need help with understanding these test results
03-03-2009, 07:37 AM
You just hang in there someone will come and help and post here very soon.Sending you hugs.
thanks for all your help. is this where i should of post. i have hard time with new site. asking questions about things.
03-03-2009, 08:20 AM
hey please dont worry, we are all still learning and getting lost.You'll pick it up slowly like all of us. Just you wait and see, there are such knowledgeable people here they'll understand what you need to know, and will post here soon. I hope you are ok and having a good week so far. I thinking of you and sending you lots of hugs.Ask about anything on here and we will all try to help you through. Im sorry i can not help you so i'll just keep hugging you instead :)
you are helping me. thanks so much. it snow here yesterday and the docs office was closed and she still hasn't called me. i hate the waiting makes you feel like just a number at docs offices. going to give them all day today than calling tomorrow if they havn't called me. when you look up the test and results online. they say something to do with the kidneys. but kidney disease doesn't cause back pain. so that another story. have a blessed day
03-03-2009, 08:43 AM
Try and call them now if you can, snow or no snow.OH by the way i love the snow :) I wish i had answers for you now to help you more. Im in the UK you see and most people in the USA usually are here in the next hour or so onwards.So by the end of the day i am sure you'll have the info which puts you at ease. No harm in calling them so why wait, they maybe open, just try. I fully understand about frustration with doctors....you will learn how much as you read some of my posts here lol, so you are not alone there.You keep posting here and we will give you support along this journey my friend.
i call at lunch time, working right now and don't want to call when at work. i live in md in usa we got 8 inches of snow sunday nite into mon. nite . side roads are still messy, tried to build snowman with son and the snow wouldn't pack at all. so he went four wheeling instead.
03-03-2009, 08:56 AM
Ah yes i understand. I hope they can help you and answer the phone when you call. If you wait for them, the call may not come as i am very familiar with.You keep on their back....you need answers and now!! You come first!
Oh how great is that.Four wheeling? You mean sledging? Oh i swear when im 90 i'll still be out in the snow doing snow angels and sledging :) Shame about the snowman though. I built a snowman the other week, only a small one and hid dog chocs in.....the snowman didnt live long when my dog found the chocs lol ...such good fun :) But ours is all gone now and its raining here in Manchester UK, so back to normal :)
03-03-2009, 09:01 AM
I am going now, but you make that call and someone will reply here soon so keep checking.
Bye for now
03-03-2009, 09:12 AM
Let me try to answer your questions individually.
1) A carbon dioxide test measures the total amount of the three forms of carbon dioxide (bicarbonate, carbonic acid, and dissolved carbon dioxide) in your blood. This test is also called a total carbon dioxide or TCO2 test.Carbon dioxide (CO2) is a gaseous waste product made from metabolism. The blood carries carbon dioxide to your lungs, where it is exhaled. More than 90% of carbon dioxide in your blood exists in the form of bicarbonate (HCO3). The remainder of the carbon dioxide is either dissolved carbon dioxide gas (CO2) or carbonic acid (H2CO3). Your kidneys and lungs balance the levels of carbon dioxide, bicarbonate, and carbonic acid in the blood. This test is usually done at the same time as an arterial blood gas test.
The normal range for adults is: 23–29 millimoles per liter (mmol/L). High values may be caused by:
* Diseases that decrease blood pH (respiratory acidosis), such as chronic obstructive pulmonary disease (COPD), emphysema, and pneumonia.
* Diseases that increase blood pH (metabolic alkalosis), such as Cushing's syndrome, Conn's syndrome, and alcoholism.
Low values may be caused by:
* Problems that increase blood pH (respiratory alkalosis), such as pneumonia, cirrhosis, liver failure, or hyperventilation.
* Problems that decrease blood pH (metabolic acidosis), such as uncontrolled diabetes, kidney or heart failure, aspirin overdose, shock, frequent diarrhea, dehydration, long-term (chronic) starvation, and swallowing antifreeze (ethylene glycol) or wood alcohol (methanol).
2) Occult Blood/ Urine Occult Blood (aka: Microscopic Hematuria):
"Microscopic" means something is so small that it can only be seen through a special tool called a microscope. "Hematuria" means blood in the urine. "Occult blood" simply means "hidden" blood; blood that is not visible, but is still present. Normally there is no blood in the urine. Blood can indicate an infection, kidney stones, trauma, or bleeding from a bladder, kidney tumor, or chronic kidney disease. The technician may indicate whether it is hemolyzed (disolved blood) or non-hemolyzed (intact red blood cells). If the cause of the blood in your urine is clear, your doctor will probably treat you. Then your doctor will check your urine again to see if the blood is gone. If it's not, your doctor may perform more tests or refer you to a urologist.
3) C-Reactive Protein (CRP):
This is a test which measures the concentration in blood serum of a special type of protein produced in the liver that is present during episodes of acute inflammation or infection. Lupus is a disease that causes acute inflammation. In the body, CRP plays the important role of interacting with the complement system, an immunologic defense mechanism.
A high result usually indicates the presence of acute inflammation. In cases of inflammatory rheumatic diseases, such as rheumatoid arthritis and lupus, doctors can utilize the CRP test to assess the effectiveness of a specific medical treatment and they can monitor periods of disease flareup. It's value is as a general indicator, not specific.
It must be noted that even in known cases of inflammatory disease, such as Lupus, a low CRP level is also possible and a low value DOES NOT mean that there is no inflammation!
So, it appears that your doctors are trying to ascertain if you've had any damage to your kidneys or lungs and if there is any inflammation occurring as a result of a rheumatic disease, such as lupus. Your results indicate that there may be some inflammation occurring and that your kidney & lungs may be involved. Your doctors will probably want to run more tests to confirm this and/or to start treatment.
Try not to over stress about these results. There are treatments for each symptom indicated. Also, increased stress WILL aggravate your symptoms. It is good for you to know what these tests mean so that you know what your doctors are looking for. In this way, you will be able to have an informed conversation with your doctor about the results and about how the symptoms will be treated.
In the meantime, we are always here to help you as much as we can. I wish you the very best.
Peace and Blessings
we have and atv thats what he was doing have a great day and thanks again talk to later xoxo
thanks so much i thought it meant something but the nurse practioner said nothing was wrong. i am calling dr. now about this i thought i needed to see the doc. you have been so much help you have no idea. have a great and blessed day.xoxo
well doc office called have to get a ct scan of kidneys joy joy that will take another week or two for those results have to do all paperwork for test first. this disease is on going thing and stinks. the waiting is going to kill me before the disease does. just needed to vent thanks
sick n tired
03-03-2009, 01:07 PM
I totally agree...waiting is the worse thing...I find I can't get it off my mind and then there is the unknown...
On the other hand, you do have a doctor who is proactive and is trying to get things along to get you into remission...another way to look at it...I just need to tell myself that :-)
03-03-2009, 01:23 PM
I though i would share my experience with this search for kidney involvement. I went to dr. with extreme pain in my back. My bloodwork/urin test (not sure which) showed "borderline kidney function." I panicked, but had to wait because I got this information on Christmas eve morning. It was first of January before I could get anywhere to get checked. Anyway, had all sorts of tests, went to a nephrologist who said yes, your kidneys are involved, but right now we can just watch them closely/.././so that is what we are doing. I was so worried that I was in for surgery or dialysis or something more horrible....now we are watching their function....what a difference.
Also, lupus nephritis (lupus in kidney) is not painful....my dr. said it was probably lupus attacking tissues around the kidney area. what a wonderful thought.
hope this helps you not worry so much. keep us posted,
03-06-2009, 07:36 PM
Thank you everyone that replied and introduced yourselves. I have been gone a few days with my family at Disneyland. Thought it would be great to ease my mind a few days. Well I did get a call from doctors office today..(not my Dr.) I met Dr. Z a couple years ago when he was on call for my DR. We hit it off very well and being a banker where he does his anking I had started helping him handling his finances so he has been very good to me. He had his office call me to set apptmnt.for me with a rheumatologist....hehe , hope I spelled that right. So anyhow I will be seeing him on Tuesday and see what the heck is going on. Again thank you all for the support you have shown, I will keep you updated once I found out any info.
03-07-2009, 05:30 AM
Oh good luck for Tuesday, sounds like he's nice, just what you need. Oh Disneyland...ive been twice in Florida then onto Clearwater.I loved it.Did you have a good time with your family? Silly question really i bet you all did.Did you go on the Tower of Terror? I did....never again lol .I lost my voice for screaming so much.....but im glad i did it.Taught me a good lesson....dont believe your friends when they say it's not a scary ride....he he he:)
I hope the trip has cleared the cobwebs in your mind and i send you gentle hugs for Tuesday.