Dr suspects SLE... many questions!

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sickinva
New Member


Date Joined Feb 2008
Total Posts : 1
   Posted 2/13/2008 8:35 AM (GMT -7)   
Hello everyone. I am new to this board and am hoping to gather insight and advice. I have been chronically "ill" for 3 yrs without any answers. When I first became ill, my Dr suspected SLE, adrenal disease, Fibromyalgia, or MS. My first ANA was "weakly positive" with a titer of 1:80, but ESR was normal. So I was sent to a Rheumy, which took over a month to get an appt. When my appt came, I felt fine. He ran every test imaginable and all came back normal. He said it wasn't Fibro either because I did not have the tender points. I have since seen Infectious disease, Endo, and Neuro... still no answers. Last week I collapsed at home, and my husband took me to the nearest urgent clinic. Where I found a wonderful Dr who I will be keeping as my primary. She also suspects I have SLE, especially due to my new symptoms and signs. My blood pressure is very elevated, as well as pulse, which is not normal for me. My BP is usually 110/70, but has been steadily elevated at 140/100 - 150/110 with a resting pulse of 100-110+. So I am being sent in for a stress echo sad My hair is also falling out, and is thin near my forehead (which the Dr noticed and asked about). I am also very fatigued. My finger-tips are a purple'ish color, which she said is Reynaud's? I am currently achy from head to toe, which comes and goes. This illness certainly has a waxing and waning pattern. My RBC's are slightly elevated, but my platelets are borderline low, and my lymphocytes are low at 20%. Still waiting for the latest ANA, ESR, etc. Does this sound like SLE? I don't have a facial rash, no fever or fevers either. I don't think my joints are affected unless your neck is considered a joint? But my muscles certainly are. I also suffer from migraines. Can you have SLE without these key signs? My Dr said that you don't have to have all 11 signs/symptoms to have SLE, and that it is very difficult to diagnose. She thinks that right now the SLE is attacking/affecting my heart and blood. But most of what I have read online states differently, so I am confused! By the way... I am a 29 y/o female, 120lbs and otherwise healthy. Does anyone have answers or advice? Thanks :-)

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 2/13/2008 9:06 AM (GMT -7)   
Hi sickinva!

Welcome to the forum. Yes . . it IS diffucult to dx. Your doctor sounds like she on the ball trying to get this figured out. There is a link at the end of my signature (4 of 11 criterea) that will show you what the criterea for dx are. You only need four of those. Do you have sores in your mouth? Some of this stuff doesn't even sound important, but when you put it all together it spells trouble.

Most of us are also sun sensative (the sun will cause rash and/or a flare or it will worsen a flare). You will learn a lot here to help you recognize some things that you never thought of as symptoms. The links in my sig might be a helpful place to start. There is a list of suggestions from members in the topic "Lupus Resources" that may be very helpful to you.

Keep us up to date on your symptoms and doctor appts.

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 2/13/2008 10:31 AM (GMT -7)   
Hi Sickinva,
 
Yes, it could certainly be lupus.  But lupus mimicks so many other diseases too.  What put me in the hospital where I got my diagnosis was heart and blood related symptoms too.  I had severe heart palpitations, and I was chronically anemic.  I also had inflammation of the lining of the lungs (peurisy).
 
Yes, Raynaud's Phenomenon would make your fingers purple.  Your toes too sometimes.
 
Your story sounds so much like my experience. I saw internal med specialists, endos, infectious disease specialists.  I think I saw every specialist out there! 
 
I'm glad you have a primary that will really get the ball rolling.  That's key. Let us know how else we can help you!
 
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

33 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, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 2/13/2008 8:37 PM (GMT -7)   
sickinva...
 
I was diagnosed in July 2007 with SLE.  In the "for what it's worth" department...
 
I didn't have the hair loss, the facial rash or any fevers.
My joints hurt very bad - but no swelling.  Muscles also hurt.
Did have extreme fatigue and the sun sensitivity.
I also have migraines.
Incidentally - one thing I found out after-the-fact is that you can have such thing as a "lupus headache".  It mimics a migraine - but the only thing that will treat it is higher doses of prednisone.
 
My ANA was 1:640 when I was tested.
 
Lupus is different with everyone.  Keep pushing until you get an answer...don't give up.
Rosie is right about things that you don't think of as "symptoms".  Keep track of everything...if it's nothing, it's nothing.  But - it may be something.
 
Hang in there...it sounds like your doctor is going to get to the bottom of this.
 
~Kim
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 9 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil, lybrel, Keppra (as needed)


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 2/14/2008 8:54 PM (GMT -7)   
Hi! Sorry you're expieriencing this trauma! My ANA was never positive, although I have SLE with kidney, heart and brain involvement. Mine was finally diagnosed with a kidney biopsy. Like others have said, every case of lupus is different! I am so thankful for you that you have a good doc. That is critical! Did she mention testing your kidney function? urinalysis? Sometimes kidney issues can cause the increase in blood pressure. Of course, there are many other factors that could also contribute to that...stress, pain, fear. Take care of yourself. Take heart in that fact that you have found a great group of caring people with alot of anwers and experience here! God Bless you, Judy

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 2/15/2008 8:22 AM (GMT -7)   
Hi sickinva. I don't have a lot to add to the great information the others have given you, I just wanted to add my welcome. I'm another one who took a long time to get a diagnosis. It stinks that it can take so long for these illnesses to get diagnosed and in the meantime we suffer for years while we are looking for answers. I'm glad you found a really good PCP - that should help a lot in getting a diagnosis. I still don't know if I would have a diagnosis today if I didn't have a really good pcp when O got sick. She knew from the begining that I had lupus even though I initially didn't have a lot of positive labs.

Hang in there - you will hopefully get some answers soon and get some treatment that will help your symptoms. 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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