New and looking for moral support

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New Member

Date Joined Feb 2009
Total Posts : 11
   Posted 2/24/2009 12:00 PM (GMT -6)   
Hello! I came across this website by accident as I was doing a little bit of research. Everyone on here seems so supportive that I thought I might be able to get a little moral support before my upcoming doctor's appointment. I'm going to try to keep this short - - I know you have a lot of people that would like feedback on their symptoms, etc. I am one of those people - - I'm very curious to find out what anyone's thoughts might be on the symptoms I've had for the past few years. I know I need to see a doctor, but I'm nervous about what kind of response I'll get and I'm trying to build up my confidence some. :-)
Five years ago, while I was pregnant with my son, there was protein in my urine several times. My doctor mentioned being concerned about lupus, but later urine tests didn't show any protein. I never did pursue it because I was focused on my pregnancy and was just relieved that the doctor didn't seem worried about lupus anymore.
Since that time I've had symptoms that have I at first tried to blame on pregnancies (I've had two more since that time) and stress.
I'll just list them and try to keep it brief:
Joint and muscle pain that moves around, mostly in jaw, knees, elbows and thumb joints
Memory loss
Thinning hair
Mouth sores
Cold hands and feet
Unusually (for me) dry skin and an extremely itchy round (maybe an inch?) rash on my knee
Pain in my upper back and sides when breathing deeply
Central serous retinopathy (have no idea of that is related and there's a good chance I misspelled it!)
I am probably forgetting something... since it seems I forget everything lately. Any feedback would be greatly appreciated. Maybe it will give me more information/confidence when I go to my appointment.
Thank you!

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 2/24/2009 12:31 PM (GMT -6)   
Welcome to the site but sorry that you are not feeling well.
If you have not checked out the LFA site you might find more answers to your questions.
Your symptoms could indicate lupus:  proteinuria, joint/muscle pain, cold hands/feet (possibly raynauds which is common with lupus).  Make a list of all symptoms and past test results (if you are seeing a different doctor) to be helpful to the doctor.  Lupus can be very difficult to diagnose and if your doctor is not experienced he/she might not make the diagnosis.  Rheumatologists are usually the most experienced in diagnosing and treating lupus but some just focus on arthritis diseases and have little experience with lupus or other AI diseases.  Diagnosis is usually done with symptoms and lab tests.  There is a lupus panel of blood tests that your doctor should order if lupus is suspected.  What blood and other tests have you done in the past?
Good luck and hope you can find out what is causing your symtpoms and get some relief with treatment.  Don't be discouraged if the first meds don't work or take months to become effective.  Treating lupus is somewhat of an individual medical experiment and what works for one does not work for another patient.

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 2/24/2009 6:54 PM (GMT -6)   
Hi LulaAnne, Welcome!

Bill has given you great advise! I just wanted to welcome you to the board! Take a look at the following link, doctor's use this "criteria list" to help in the dx process, usually if you have 4 of the 11 symptoms doctor's will consider lupus.

Don't be scared or nervous, it's better to find out something is wrong than ignore it and your health get worse. Feel free to ask us more questions. Take care
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)

New Member

Date Joined Feb 2009
Total Posts : 11
   Posted 2/25/2009 7:24 PM (GMT -6)   
Thanks very much for your responses, Bill and Stacie.
I did think of some things that I forgot to mention in my post, but I'll take a look at the links you included. I'm also going to take a cue from some of the other posts I've read and write down what's been going on so I don't forget when I talk to my doctor.
We've only lived in this town for 3 years and during that time I've gone through two complicated pregnancies. I've seen my ob/gyn for everything since I was in her office so much anyway, but it's time for me to find a primary care physician. It's always hard to find a new doctor, but I have gotten some recommendations and hopefully this doctor will be a good one.
Thank you again!

Regular Member

Date Joined Feb 2009
Total Posts : 20
   Posted 2/26/2009 8:55 PM (GMT -6)   

Hi Lulalann! I'm new here too but have had SLE for 15 years. I remember my first rheumatologist well- if I ever see him again, I'll sue him. He told me I was working too hard and maybe depressed and should see a psychiatrist! This was with a +ANA, false positive VDRL and about 11 of the symtoms on the old SLE list. But I found a second one that was wonderful and got me through a difficult pregnancy and my lupus flaring very badly.

To me, it sounds like you have a lot of symptoms of lupus. Everyone is different- some people aren't sensitive to the sun, but I'm very,very sensitive to the sun and fluorescent lights. Labs come back positive, then negative. But you do have a lot of symptoms to deal with, so be sure to write them down and write down any questions you might have. Best of luck and post again after your appt.

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 2/26/2009 9:27 PM (GMT -6)   
Hello LulaAnne,
Welcome to the forum.  You are in the right place to ask these questions.  We'll do our best!  Your symptom list is fairly consistant with Lupus, but also with Fibromyalgia.  Joint pain that moves around is classic Fibro.  So is jaw pain.  The pain when breathing deeply is possibly Pleurisy (inflammation of the lining of the lungs).  VERY common in Lupus.  The other symptoms you mentioned can be found in Lupus and Fibromyalgia.  There are a lot of us here with both diseases.
Bill and Stacie gave you excellent adivce and ideas.  Let us know how you make out at your appointment!
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

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Co-Moderator for the Lupus and Fibromyalgia forums

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