I have at least 3 criteria, do I qualify???

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Organicchick
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 11/2/2007 7:04 PM (GMT -7)   
Hello,

I have been reading many of the forums, you all are wonderful people- I can tell by your support for each other!

I humbly ask for your seasoned opinions with many thanks in advance...

I am a 33 yr. old mother of 3 healthy girls. Recently I had requested a sonogram for some right upper quadrant pain I'd been having and gallstones were discovered. Until a week ago, I was consumed by researching on the internet to see if I could flush out my gallstones in a best effort to keep my gall bladder in tact. In doing research, one subject lead to another, and another, until it seems I researched every ailment I've ever been afflicted with. I have done this in the past as well, but for some reason (intuition?) this time, when I was reading up on the Lupus criteria, I decided I was going to ask my Dr. for the ANA test. Reasons why: I have rosacea (I think it is rosacea, but I suppose it could be a malar rash?), I have Reynaud's, I have had pleurisy in the past, - and since my ANA test has come back as positive at 1:40, I am now getting very concerned (scared)- regardless of a low titer. All my regular blood work (just the typical lab work, not specific to lupus) came back fine. Now I am waiting on the DNA test results- and will be seeing a rheumatologist soon after. I do not seem to have any sun sensitivity, the most I can note is that my skin does burn more easily than when I was younger. I don't seem to feel any aches in my joints. I don't seem to have any unusual rashes. I do get, what could be, ulcers in my nasal passages once in awhile (although I thought that was caused by the air conditioning) which feel dry and cracked with some minor bleeding. I feel tired some days more than others, but it's hard to pinpoint fatigue right now. I recall having bouts of fatigue in the past- but it could always be situational.

My question for those with experience:

If my DNA comes back as positive, along with my positive (even though low) ANA, my reynaud's, my past pleurisy, and regardless of if my rosacea is a malar rash (which I don't think it truly is a lupus rash) and the other small details I mentioned....is this enough to make a Dr. Dx me with Lupus??
I realize he should order more testing at this point regardless...I know about the 4 out of the 11 criterion- but what I want to know is how likely, in your opinions, do I have the beginnings of lupus?

Again, thank you all.

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/2/2007 7:38 PM (GMT -7)   
Hi Hun, welcome to the group. At this point I think you are doing all the things you can. Getting the tests done and seeing a Rheumy. With Reynauds you could easily have any type of auto immune disease. Not of which are pleasant. The low ANA doesn't really mean much, people here with Lupus don't always have a posstive ANA. There really isn't any way that anyone can tell you what is going on. Even your rheumy may take a while to figure it out. I have been testing possitive ANA for years and they still don't have me nailed down. I have a few suggestions for ya. Get a notebook. Take your temp 3 times a day and write it down. If you have a rash (they don't all look like the one on the computer) Take pictures of it because you probably won't have it when you see the doctor. Anything even if you think it's nothing may be very important for a diagnoses. Loosing hair, sweating, itching, fatigue, muscles aches. tell them about the ulcers and nos bleeds let the doctor determine what he/she thinks it is.
I had to have my gallbladder out 8 years ago. I still have the RUQ pain. My rheumy thinks it's PBC primary biliary cirrosis which is also autoimmune. and is treated basically the same with the same drugs as lupus. So I know this is all just as clear as mud to you but keep asking questions tell your doctor everything. If you don't get answers from him seek another doctor. There are people who have gone 10 years or more trying to get a comfirmation. Usually they put you on meds for your symptoms even if they don't have an answer yet.
You're right we do try to support each other here it's a wonderful group.
let us know how your tests come out and keep asking questions
welcome
carol
God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 11/2/2007 8:01 PM (GMT -7)   
Hi Chick! Welcome to the forum!

Carol gave you some great advice. If you have your lab results for the ANA, see if it indicates a pattern. Certain patterns are more likely to be lupus, others for scleroderma, etc.

Lots of info in the links at the end of my signature too!!

Glad you found us!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Organicchick
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 11/2/2007 8:27 PM (GMT -7)   
Dear Okie,

Thanks so much, it's so nice to hear from someone who's going/gone through this already. I appreciate all of your words and feedback more than you know. I am hoping to see a nephrologist before any gall bladder surgery- to rule out any link with lupus or anything else that might be associated/linked to the upper right quadrant pain.

Always Rosie,

Thank you also! I realized that I forgot to mention the ANA was speckled!

On a side note: as one might surmise from my "code name", I do prefer natural methods of medication, health relief, etc....so I'm not apt to jump on a Dr.'s prescriptions right away if they do decide to get me on something without further investigation...I guess I'm skeptical of modern day medicine in some respects....but thankful for other reasons.

Anyone elses' inputs are greatly appreciated as well :)

Thanks everyone!

Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 11/3/2007 4:26 AM (GMT -7)   

Organicchick,
A rheumatologist would be the best one to determine if your rash is a lupus rash or if it is rosacea.  (My dermatologist says it's rosacea, my rheumy says it's lupus, personally I think it looks more like lupus than rosacea.  According to my rheumy it's typical for a dermatologist to give a diagnosis of rosacea, they don't know what they are looking for when it comes to a lupus rash.)

Regardless you could literally drive yourself crazy second guessing the doctors and the test results.  You could go your whole life with vague symptoms and hardly any blood tests to back you up or the tests could turn around and go one way or the other giving you a definite diagnosis one way or the other. 

Not all lupus patients get a reaction to the sun just like not all lupus patients have organ involvement or all lupus patients have the butterfly rash.  (My sister is 63 years old, was diagnosed with lupus in her late 20's and within the last 7 years is when she first started developing the butterfly rash.)  Sometimes I get the sun rash, sometimes I don't. 

It's been my experience that if you have a strong case of symptoms but no blood tests to back it up that a good doctor will treat you for lupus.  I think that a titer level of 1:40 is still considering in some labs negative but I'm not 100% sure.  Chances are they wouldn't take into consideration a titer level of 1:40 though because they've only had to dilute it once to remove the antibodies.  A speckled pattern might change a doctors opinion on that though saying titer levels have nothing to do with it, it's all in the pattern. 

I think almost everyone on the board would agree with me in saying that the lupus meds we're put on makes you feel better today, controls it for next week and a month from now.  It's not like an allergy med where you take it that day and it helps for that day.  It is so very important that we all try to follow the plan on doctors set up for us.  Feeling bad isn't the only thing we have to worry about, for some they have organ involvement which could turn into a serious situation.  We can try to help control the lupus by diets and other ways of trying to take care of ourselves better, but the chances of being able to control lupus by homeopathic treatment only could be dangerous.  Please, please be careful and don't ignore a doctors recommendations until you research it completely, it could eventually be a decision that haunts you.

Most of us have gone to at least three or four doctors or more before we have found that "perfect" doctor.  And even finding that "perfect" doctor you could find the rug pulled out from under you because they've retired or moved and find yourself on that quest of again trying to find that perfect doctor.  It's sad that we have to go through so many rheumy's to find a good one.  If you find yourself not feeling good, doctors not listening to your complaints just keep on looking for a doctor that will help you.  It's not normal to not feel good day in, day out and I think that most people here would agree if you have more days you don't feel good than days you do feel good then you need to keep on trying to find out what is wrong with you and don't give up until you do find out what is wrong.

The good thing is you found a wealth of information and understanding when you stumbled into this forum.  There are so many people here that are so well educated on Lupus and other autoimmune diseases and you should find yourself among a lot of good people that will be able to help you.

Good luck in your quest to feel better!  Maybe someone can help you with a doctor if you live in their area!

 


Gidget^
 
SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Clinoril, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Folic Acid, Loratab ,Percoset, Toradol
 
There is no psychiatrist in the world like a puppy licking your face.
 
 


Organicchick
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 11/3/2007 7:19 AM (GMT -7)   
Gidget,

Thank you, Thank you, Thank you :)

I would always research the ins and outs of medications before omitting anything. I just prefer the alternative medicines over the "FDA approved" medicines- mainly because of the FDA's track record with putting things on the shelves- only to remove them later (oops!). If something has been around 25-30 years, I tend to feel better about taking it if the research has been done and the population has proven it's useful effects vs. the negative effects.

I will definitely stick to my guns with getting a good rheumatologist. It's funny because my Primary Care Doc. didn't want to test me for the ANA at first. We're military and go to a military facility for health care. Because of the area we live in, the Clinic here on our military base is having a hard time getting Docs, let alone keeping them- nobody likes living here (not even me!). Point being, I have already tried several different docs, PA's and NP's, and had to start over with each of them. This last Doc. (she's really a NP), the one who ordered the ANA- had only seen me once when I requested the ANA. I have to tell you I felt like she was in a rush and couldn't be bothered with many of my concerns. She actually told me to "keep (my) your list" (of concerns) as she left the examination room. She's a civilian Nurse Practitioner by the way- not military- she just works at the military clinic. She didn't order the ANA until after I called the clinic- a few days after my initial visit with her- and then after I spoke to her nurse (who is a man and was much more helpful) did I get my lab tests ordered. I just saw the NP 2 days ago- and since the positive ANA, she changed her tune towards me. I also brought my husband (in his flight suit) as my support- I feel she took my concerns much more seriously with him next to me and with the ANA results. She is just waiting on my RF and DNA results before she sends me along to the rheumy (which will be "out in town" at a "civilian" facility, not military). The results should be back within the week- and then begins my search for a good rheumatologist.

Just for a side note...I don't particularly feel bad on a daily basis...but then again, I suppose I could be at the most benign stages of lupus if at all?? I recall bouts in the past of feeling tired, of having pleuritic episodes where I feel I couldn't catch enough breath and/or the pain in my lung that felt like a "stitch" in my side (I was actually diagnosed with pleurisy a long time ago by a doc. I saw one time only), Reynaud's is constant (whenever I get cold enough), and the rosacea-type rash I've had since the birth of my first baby over 10 years ago. I've not had any miscarriages- that I know of, nor were my pregnancies particularly difficult. Other strange symptoms I've had besides the gall-bladder type attacks (just a couple a few months back), is bad cramps in my calf- and a lingering feeling of a knot there after (which I was screened for venous thrombosis, per my request, and it was negative). I have varicose veins, pronounced in my left leg. I also feel dizzy upon sitting/standing up some times. Sometimes my arms feel numb when I am just laying in bed with my arms setting upon my belly. During my upper quadrant sonogram, the Doc found 2 spots that he thought were kidney stones- but "nothing to be concerned about", I've been told by my NP. I also have had, since the birth of my 3rd baby, a raw, burning and gnawing feeling in my stomach (duodenum?), whenever my stomach is really empty-particularly in the a.m. times- but not always. I've been tested for H.Pylori via blood work, had the G.I. /endoscopy series all about 6 years ago, with no true diagnosis- yet this ulcer-like feeling has not ever gone away (it's been 7 years). Just wondering if any one of you have had/ or has these symptoms?? I don't know how much of this pain in the stomach, the gall stones, the kidney stones, etc. might or may not tie in with possibilities of lupus.

ladybug44r
Veteran Member


Date Joined Jul 2006
Total Posts : 831
   Posted 11/3/2007 9:44 AM (GMT -7)   
Organicchick, What military base are you at. I"m an army brat. Been to a few of the bases and their wacked out drs. LOL

Veronica

Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 11/3/2007 8:14 PM (GMT -7)   
Organicchick,
I think you have enough issues to throw up a flag and they need to be checked out more. At least they're running some more specific blood tests. You will make sure to post a message when you get your results, won't you?

I've had a few dsDNA's done in the past, this is the first time that it has ever come back positive. Some articles I've read says that the dsDNA is an indication of the severity of the disease is on you and if there is organ involvement. Then I'll turn around and read something that says the total opposite. It really does get very annoying to constantly read conflicting explanations. I honestly would go more on what the others here in this forum have experienced in their blood tests and symptoms than anything else. There is a lot of good people on here that is more than willing to take time to sit down and answer whatever questions you have or just to listen when you have to blow off steam no matter how trivial it sounds. It's kinda nice, everyone here is like the "perfect friend". The best thing you've done for yourself so far is find this forum.

I believe there are a few people on the forum who are seeing dr's on an military base and can offer some good advice how to get some help.
Gidget^
 
SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Clinoril, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Folic Acid, Loratab ,Percoset, Toradol
 
There is no psychiatrist in the world like a puppy licking your face.
 
 


Organicchick
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 11/4/2007 6:55 AM (GMT -7)   
Hi Gidget,

Thanks again for your input....I will definitely keep posting- and will post my DNA results as soon as I hear from the Nurse Practitioner.

I think the most frustrating part of getting a diagnosis with anything, is how not everyone fits a particular profile- everyone's symptoms are different, and those Docs that don't see outside the box, can be less willing to explore options till most symptoms can be explained. I wish that every doctor came with "If this were happening to me, this is what I'd want done" attitude ;) I sometimes ask people who aren't so helpful (in all walks off life) to put themselves in my shoes in frustrating situations, then they tend to be more willing to work with me!

Veronica,

I'm in Texas- at a Navy base, I'd rather not get too specific ;) I truly feel that good/bad docs come in all places- I could be given the run around in the civilian world too. At least being military, there are consequences, ultimately, with upper ranks and/or health benefit advocates, should any Doctor (or ANY employee on a military base) be inappropriate or not do what they should. Military life has it's perks and it's pains, eh?

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/4/2007 6:38 PM (GMT -7)   
Hello Veronica:

I noticed on your post that you are treated by military docs. I am too at bethesda naval hospital. Make sure you keep a copy of all your medical records. I've got 7 volumes and I'm a seriously big "stump" to my doctors. I've got a dx of lupus, but it could be UCTD, or MCTD. I was treated by all the meds offered for the lupus and I was one of the "rare" few that ended up getting cancer from my treatments. So now I sit with lupus/RA/Fibro/Gastroparesis/MDS (blood cancer). I'm going to need a bone marrow transplant to save my life.

So I'd just say make sure you keep close eye on your records and I know how the system works we've been in the military for 22 yrs and have just recently retired. If I can be of any help in any way please give me a shout. I hope you don't have lupus. Seeing a rheumy is most important and they'll be able to tell you if it's a malar rash. You take care and keep in touch.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


Organicchick
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 11/4/2007 9:22 PM (GMT -7)   
Dear Barbara,

Wow...I am at a loss for words- I guess that's why I am such a skeptic when it comes to modern medicine. I am so sorry for what you have gone through and continue to endure.

I truly feel the best approach is to be as informed as possible on my end, to inform the Docs of everything I can from my past health history, and to remember that being healthy starts with nutrition and knowing how to maintain my body at optimal-as possible- health. I was a kid who grew up on fast food.... I feel like my constitution now is a result of knowing I did not have the healthiest beginnings. They say traditional MD's only get a few hours of actual nutrition education. This is why I feel the need to be skeptical of all the meds. one might ordinarily hand out. I'm not saying I wouldn't take medications prescribed to me, I just do a lot of heavy research before going along with the Docs' prescriptions. I used to be very trusting of any Dr., but now that I've been around a few more years and have 3 young girls that have had numerous ailments here and there, I have seen the Docs don't know everything- in fact, I feel that maybe 50% of the time are they even right with the diagnosis'. I remember Dr. after Dr. writing scrips for antibiotics for my daughter who suffered 3 (bad) ear infections every year for several years....and I trustingly gave them to my daughter. Then, one time, a doc said to me, "I could write her a scrip for some antibiotics, but honestly, this is most likely a viral ear infection and it's not going to help her". Come to find out, most ear infections are viral. For every ear infection after that, we just soothed her ear with warm packs, warm oil drops, and ibuprofen for a couple of nights- and the infection subsided. I know that this seems simple, an ear infection as compared to the intricacies of something as serious as lupus- but my point being that something as simple as an ear infection should be a more honest approach by other Dr.'s - who mostly appease parents by giving them a scrip.

As far as the military docs, I will be seeing a civilian rheumy more than likely....unless they send me to Wilford Hall (in San Antonio).

Barbara, how do they help you find a match for the bone marrow? Do you have some sort of network for this??

I wish you all the best and thank you for your warm note
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