Brand new to Lupus

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nsearch212
Regular Member


Date Joined Mar 2008
Total Posts : 72
   Posted 3/8/2008 12:16 AM (GMT -7)   
 
  Hi I am Natalie and I've just been told I have Lupus.... I just went to the doctor last week and they informed me that I have "abnormal" blood tests. My ANA is positive. My priamry care doctor tells me that I have Lupus. He then quickly refers me to a rheumatologist and leaves the room before I could even ask him what exactly Lupus was!!! "It's out of my jurisidiction." He says and then tells me to take some ibuprofen if I have a "flare up". Sorry but this is all greek to me. As you can assume I am in a state of shock and dismay. I am 25 years old and thought i was in good health. From the research I have conducted I have some of the symptoms of Lupus but have never expierenced the rashes or skin irritations associated with it. I can be out in the sun and not break out even though I have very fair skin. I do ocassionally suffer from joint aches and what feels like a burning sensation on one side of my body and swollen joints. I have endured this since at least the year 2000. Over the last 3 years I have developed unexplained heart palpataions and dizziness. I have had 4 EKGs and 2 x-rays of my chest and doctors found nothing. All of the doctors at the time concurred it MUST be psychological and diagnosed me with panick attacks. All of my CBCs and metabolic panels are completely normal. So I went in for a physical last week and i get "the call" saying that all is not so right and dandy with my bloodwork!!! You truly get bad news when you least expect it. So hear I sit waiting for my "refferal" that could take up to 6 weeks and then you have to factor in another 6-8 weeks to see a rheumatologist. Right now I have a list of questions and no answers. Any advise would be very much appreciated... Thanks soo much

doodlebee
Regular Member


Date Joined Mar 2008
Total Posts : 60
   Posted 3/8/2008 1:00 AM (GMT -7)   
Hi, I'm sorry you're going through this. Did your PCP say if anything else besides ANA was abnormal, and did he tell you how high your ANA is? I'm thinking he really shouldn't have told you that you have lupus. He should have left the diagnosis to the rheumatologist he is referring you to. Lupus could be a possibility if you have a positive ANA and enough of the symptoms to meet the criteria, but people can also have a positive ANA and not have lupus. There are other things it could be, and there can be false positives too.

Here is a site that lists the specific criteria: Lupus.org
It's not letting me link directly to the page, so where it says "about Lupus," click "Introduction to Lupus" and then "Diagnosis."
4 of the 11 criteria have to be met to diagnose lupus.

I hope the referral won't take too long so you can get in and hopefully get some real answers from the rheumatologist. Diagnosis is not usually easy, though, and can take a long time (months or even years) of being monitored and retested. I'm going through the diagnosis process now, too, and the waiting isn't easy, but the people here are really helpful. :)

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/8/2008 8:51 AM (GMT -7)   
(((( Natalie ))))) you poor thing, I agree with Doodlebee, your primary doctor shouldn't have told you that you have lupus, especially if he wasn't going to hang around and talk to you about it. It should be up to the Rheumy to do that and he may not even do that on the first visit. Lupus is very hard to dx, there is not one single test used to dx it, the doctor needs to know all of your symptoms, see how many of the 11 criteria (link below) you meet , family history and positive labs. It's like a big puzzle they have to piece together and of course rule other things out too. My dx took over a year and 3 rheumy's.

What other positive labs do you have? Just relax and read read read all you can about lupus, knowledge is power. The link Doodlebee gave you to lupus.org is a great link, along with the one below and the resource links here at HealingWell. Hang in there, there will others along shortly to give you some terrific advise, please feel free to ask more questions. Take care

www.uklupus.co.uk/dxlupus.html
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 3/8/2008 9:09 AM (GMT -7)   
I think my PCP worded it much better. I'd been complaining mostly of fatigue for a couple of years -- one day she did some extra blood work -- I don't know what. Came back in and said - I think you might have lupus, here is a rheumatologist who can help figure it out.

I didn't quite know what lupus was at that point either. Read some about it, didn't quite think it fit. But decided the rheumy was the specialist -- and a trained, experienced doctor --- NOT me!

I decided making myself crazy while waiting for the rheumy appt wasn't helping me any. I read some, but tried to take it with a grain of salt -- that ANA can mean lots of things, it's not exclusively for Lupus, although many PCPs aren't aware of everything it could be.

Sometimes PCP's (and patients) are quick to rush to a diagnosis -- please try to wait and let the rheumy do his/her job. I think if we go in and say "I think I have lupus" they tend not to consider other similar illnesses that might be a better fit.

Meanwhile, take a few deep breaths. Regardless of the dx, you still have the same symptoms & symptom history. A diagnosis isn't bad -- it means they know more about how to treat you!

Check out the links in my signature for lots of lupus resources...keep reading on here and LOTS of info/experiance is available.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions



okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/8/2008 10:48 AM (GMT -7)   

Hi Natalie, I'm sorry your doctor freaked you out like that. I think alot of them were absent during the chapter on bedside manners.I agree with the others to try to relax and wait. I do however feel a little different about the research thing.

I have been diagnosised with so many different things that I would study about and get a handle on just to find out later I didn't have what they thought I had. You can drive herself crazy looking up all this stuff. I beleive that until you have a real reason to find out all you can that you should go by how you feel. The truth is that you are the same person you were before you doctor called ya. It sounds like you are feeling good so that's the biggest thing we all want to acheive here.

However having said that there are things that you can do to prepare for your rheumy appt:. Take your temp. at least 3 times a day and write it down. Even if it's normal. Keep a journal. Ask your family if there is anyone that they know of with any type of auto immune diseases. Write down every symptom that you have noticed. Even if you have lived with it for years and it just seems to be nothing at all to you. It could mean somthing to a specialist.If you do have anything appear like a rash or swelling and sores in your mouth take a picture of it because you probably won't have it by the time you go to the rheumy. Like the others said there are many things that can cause a possitive ANA. In fact some people that don't have anything wrong with them have a possitive ANA. One quick glance at a lab test is not going to do it. It could take years to be diagnosised. Most doctors will treat your symptoms long before you get a Diagnosis.

Try not to stress too much if possible. If you do have lupus the worse thing you can do for yourself is to stress about it.

Please keep us informed and welcome to the group. I hope your rheumy is a good one and can answer all your questions. Which you should write them all down too. That way when you get there you won't forget what you wanted to ask.

hugs carol


God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4. 
I will never leave you nor forsake you!
 
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 3/8/2008 1:34 PM (GMT -7)   
Welcome to the forum Nsearch!!

You've found a great support group as you can see by the posts above.

I'll direct you to a great topic "Lupus Resources". The link is at the end of my signature and you'll find one of the posts contains tips for new members.

Take a deep breath sis. You were right about waiting for a rheumatologist. Some of us have had to wait 3 or more months for a first appointment. If you have pain on a regular/ongoing basis, you might try (with Dr.'s permission) taking that ibuprofen (Advil) 3x a day. If you get ahead of the pain it is more easily controlled. When you make the rheumy appointment, find out from his/her office if they want you OFF all meds or if taking the ibuprofen is ok. Sometimes they want to do all their bloodwork w/our bodies clean of all meds.

Read this info in the links provided in my signature and then ask any questions you might have. Try not to worry too much and find something fun to do while you wait (a good book, some type of craft, etc.).

Some hot tea for you!!

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


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/8/2008 10:15 PM (GMT -7)   
Hi Natalie,
 
Wow, your story sounds just like mine.  I was 26 when I was diagnosed. That was in 2000.  I also had heart palpitations, anemia, and VERY abnormal blood work.  But it took a decade for that blood work to become abnormal!!  The heart palpitations and dizziness turned out to be something that an EKG won't pick up on necessarily.  I have Libman Sach's Endocarditis. It's inflammation of the mitral heart valve.  The best test for seeing how the heart is working is an echocardiogram. (an ultrasound, painless).  I would definitely get a referral to a cardiologist as well as the rheumatologist. 
 
The others have given you excellent advice so I won't repeat what they've said.  I hope you can see your rheumatologist sooner!  We all know the stress of this disease and all its complications.  Don't hesitate to ask us any questions you have okay. 
 
Talk to you soon,
 
Ginny
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


nsearch212
Regular Member


Date Joined Mar 2008
Total Posts : 72
   Posted 3/8/2008 11:54 PM (GMT -7)   

 

 

           I just want to say thanks for everyone's advise and support. As you can imagine Im scared and very anxious but trying to keep it cool for my husband and daughter (who will be turning one next week). Good news finally got my refferal to a rheumatologist, going to call him first thing monday morning and hopefully with any luck get an appointment within a reasonable time. Will definately keep you all posted!!!!

-Natalie

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/9/2008 6:18 AM (GMT -7)   
Natalie, I wanted to add my welcome. I'm sorry your doc thinks you have lupus and I really hope you get an appointment with a great rheumy who will take time to talk with you and explain things to you. Hearing about lupus, especially when you aren't given much info can be scary and overwhelming. Hang in there and know that we are here for you. Please ask any questions you have. I'm glad to hear you will keep us updated on what you find out.

Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


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