Opinions about my symptoms???

[wallygirl75]

Hello, and thank you for taking the time to read this.  I am 33 years old and I am very frustrated with always feeling under the weather.  For about four years now I've been complaining to my family doctor about various symptoms.  
Fatigue, headaches, achy hands/knees/neck/back, low grade fever (comes and goes), nausea, abdominal pain, and a rash that comes and goes on my scalp (my hairdresser told me about it) that is not bothersome in ANY way.  Any time I go out in the sun my face gets REALLY red, even if I'm out for only a few minutes...and only across my nose and cheeks.  I am slightly anemic, have been diagnosed with gastritis and reflux, high blood pressure, low thyroid (which also comes and goes), and the pain I've had in my neck has been diagnosed as cervical spondylosis.  (sorry, that is probably spelled wrong)  Currently I am waiting for blood work to come back.  I know he asked for ANA and a comp panel, but I don't know what they are and there was one or two more that I forgot...lol    Does anyone have these symptoms and could it be Lupus?  I want a name to what has been happening to me so that my family and co-workers don't think it's all in my head and so that I can start to be treated properly and get SOMEWHAT back to "normal".  Thanks again...

[luppygirl]

Well I have Lupus and I do have some of those symptoms but that still doesn't mean you have lupus.  Lupus is the disease with a thousand faces ( that's what they call it)  Don't jump ahead of yourself, wait until your lab work comes back see what they say and go from there.  I do know what you mean about wanting to have a name but you want to make sure it is the right one and that you get treated right. Even if you don't have Lupus it does sound like there is something wrong with you so whether or not you have lupus i think you do have something wrong with you so eventually you will have a name for what is wrong with you.  I highly doubt any of this is in your head.  I hate when people say that.  It makes me so mad.  Like why would you make any of this **** up.  People can be so frustrating. Let us know what answers you get please.

[LZFreedom]

You didn't mention if you'd had any blood work done? If you're interested, the OK Med. Research Foundation is doing a lupus study and will provide you with a Very Comprehensive blood workup for free ~ and copies to you & your doctor!
Lupus is an invisible disease ~ discoid lupus is referred to in Latin as "Wolf"
or "the Mask" because of the redness across the face and nose.
My discoid lupus (lupus erythematosis) was diagnosed by a skin biopsy of one of my lesions ~ this one was on my upper back. "The dr. says" I don't have systemic lupus, but I definitely have all of the fatigue, achy joints, periodic brain fog/depression symptoms that go along with it. Best wishes to you!!! Keep coming back here ~ you'll find lots of great support and a huge variety of feedback! Love & LIght ~ LZ

[karajo]

Hi WallyGirl,
Keep us posted on what you find out.  
I know you are really wanting to find out what is going on so you can get help.  Lupus is a difficult disease to diagnose.  There are so many other things that mimic lupus type symptoms.  Lymes disease is one of them.  Low vit D, fibromyalgia, chronic fatigue, MS...just to name a few.  So a dx can sometimes take years.  I know that is quite overwhelming for you.  I know a lady whose husband got a dx very quickly.  Most of us suffered for a very long time before a dx. But the delay alowed me time to get life insurance.  FYI, you will not be able to get it if they dx you with lupus.  (not that lupus is a death sentence, it is not.  It just puts you in a "high risk" catagory.)  

There are 11 criteria for a lupus dx.  One must have 4 in order to get dx with lupus.  

I'm so sorry to hear that you are feeling bad.  We all know exactly where you are and have been there.  I know I'm praying for you as well as others on this site.  God bless, Kara

[wallygirl75]

Sorry that I forgot to tell you all that I did have blood tests done.  Have been waiting for results.  So far all the blood work shows is that my LFT is "through the roof" (doc's exact words) and not showing reason for it.  He wants me to get an ultrasound of my liver ASAP which is now scheduled for Wed. morning.  What confuses me is that they said nothing to eat or drink after midnight the night before the test.  For an ultrasound?  Really?  I don't even know what to think at this point, but I'm just going to sit and TRY not to worry.  I am going to get copies of my lab results this afternoon when I pick up the order for the ultrasound.  I will check back in later on.  Thanks so much everyone!

[wallygirl75]

Here are my lab results.  I have no idea what any of them are, so I am posting the name, result, lab's norms....  
test.........................result.......................lab's normals
Glucose...................93...........................65 - 99
BUN........................12...........................6 - 22
Creatinine.................0.9.........................0.5 - 1.2
Sodium....................140.........................136 - 145
Potassium................3.8.........................3.5 - 5.5
Chloride....................102.........................98 - 110
CO2.........................25...........................20 - 30
SGOT (AST).............136..........................10 - 37
SGPT (ALT)..............243..........................5 - 40
ALK Phos.................98............................25 - 115
BILI TOTAL................0.3..........................0.2 - 1.2
TOT Protein..............7.5...........................6.4 - 8.3
Albumin....................4.7...........................3.5 - 5.0
Globulin....................2.8...........................2.0 - 4.0
A/G ratio...................1.7...........................1.1 - 2.6
Calcium....................9.3...........................8.4 - 10.5
anion gap..................13........................(blank...no norms???)
uric acid....................4.2...........................2.2 - 7.7

CRP.........................0.6................................0.0 - 0.5

Rheum fact qnt.........<20................................0 - 20
ASO titer...................46.0..............................0.0 - 200.0

ANA..........................NEG




Now, I'm no doctor, but when he said my lft's were off the chart I didn't expect THESE numbers.   NOW I'm worried.  

[wallygirl75]

Ok, so the ultrasound showed nothing.  Since my family doc can't find anything causing the high lft he is referring me to a gastroenterologist.  Guess I'll be moving this to that forum.  Thanks for your posts.

[cudagirl]

Did your dr mention anything about autoimmune hepatitis?

[wallygirl75]

He did a hepatitis panel and it came back negative.  I've never heard the term "autoimmune hepatitis"...What is it?  And how do I get him to do other tests to rule out Lupus?  What tests should I be having done to make sure we aren't missing something?

[cudagirl]

Here is a great website, www.mayoclinic.com/health/autoimmune-hepatitis/ds00676. I have autoimmune pancreatitis....a little different but basically the same. You need to go to a RA doctor.....they will help you get a dx.  Lupus has 11 criteria and you need 4 for Lupus, a Rheumy will know what to do.

[wallygirl75]

Well I DO have arthritis as well, so a Rheumatologist would be good for that as well, right?  Maybe if I can get a good Rheumy I will finally get some kind of diagnosis tying all my symptoms together.  There is no way that I am just so unlucky as to have all this stuff going on with none of it related.  Know what I mean?  I did call my primary a while ago to ask for a referral to a Rheumy, so I will keep you posted.  Thanks again.

[karajo]

Hey girl, I was doing some investigating the AST and all.

High AST: rule out liver disease, ancer, skeletal muscle diseases (myosistis and muscular dystrophy), trauma, pancreatitis, renal infarct, eclampsia, cerebral damage, seizures, alcohol, heart tissue sidease (heart attacks, pericarditis), infections in the bloodstream (septicemia), intramuscular injections, drugs such as corticosteroids, primidone, antibiotics and other drugs processed through the liver.

High ALT: Rule out hepatocellular (liver cell) diseases such as cancer, fatty liver, cell death due to bacteria/viruses/hepatitis or toxins, cirrhosis, obstructive jaudice and infectious mononeucleosis.

What kind of arthritis do you have?  Osteo or Rhematoid?  

I can't stress that you spend time in the sun BEFORE you have your ANA checked.  Maybe you could talk a dr into rechecking your ANA.  You do have alot of lupus symptoms.  

Praying for you,
Kara

[wallygirl75]

Since he just redid my bloodwork (liver tests only I think) on friday, I will wait for the rheumy to ask again about the ANA.  When I get my referral appointment I will make sure to spend time in the sun prior to that.  I hope it is an afternoon appointment!  I have osteo arthritis in my neck (due to two rear end collisions about ten/fifteen years ago).  Not sure about my hands/knees/ankles/back just yet.  My primary said it may be EARLY RA and that is why it's not showing up in the bloodwork yet.  I have to go get my son from grandma's house (three hours away) tomorrow so if the rash shows well in a picture when I get home I will post it for you.  Also, once I have any news I will be sure to update this thread.  Thanks so much for your support.  It helps to know that someone is there for me to talk to.

Praying for you as well...
"Wally".... (Paula)

[karajo]

I know what you mean, it does help to know there is someone to talk to.

I have a friend w/ RA and she gets what I would call a malar rash.  I'm not sure if it is something that goes along with RA and or lupus....or if she has both RA and lupus.  She is definitely NOT as sick as I was before I was dx and put on meds.

Do you still have your gallbladder?

[wallygirl75]

In the past three years or so I have had my gallbladder removed, appendectomy, hysterectomy, kidney stone (twice--both from the right kidney) and I was supposed to have my tonsils out but after all the other surgeries and procedures (not to mention doctor visits) I couldn't afford it.  Too many co-pays...lol
Do you start to feel nauseated if you are in the sun for too long?  We went to a friend's house for the 4th and after about 45 minutes I started to feel slightly nauseated, got a headache and felt just plain icky.  I stuck it out because I hardly ever get to talk to other adults and I didn't want to be the antisocial one at the party.  Hope to hear from my doc today about the new lab results (lft's and lipid profile) and about the rheumy.  I'll post those when I get them.