View Full Version : New Here - Hoping you can help...

04-23-2009, 01:04 PM
Hello Everyone,

I am not going to go into a bunch of detail, but I am new here - I saw a rheumy for the first time today and he was one of the worst docs I have ever met with in my life, no answers - so I am hoping I can get some here... Here is my short story, symptoms, and recent blood work results - think its Lupus? I sure do, but the rheumy blew it off:

I am 24, pregnant with second baby (3 months along, first daughter is 14 months). I am hypothyroid (last check was a TSH of 22!! so, dose was raised - I never fall within normal though, even with meds). I am sarcoma survivor - 11 years in remission.

Okay, here are my recent lab results:

RPR - positive (biological false-positive, Syphillis)
FTA-ABS - negative (previously tested positive, then tested negative twice - this is related to above RPR)
Creatinine .52L (Low - good?)
Creatinene Clearance 168H (High - good?)
Cardiolipin AB - Negative
ANA - 1:320
DNA (ds) Ab - 1
SS-A (Sjogren's Ab) - 2.8 (Positive)
SS-B (Sjogren's Ab) - <1 (Negative)
Smooth Muscle Ab - <1 (Negative)
Protein, 24 (all within normal range)
C3 - Normal
C4 - Normal
Complement, Total (CH50) - 80 (High)
PTT LA (Lupus Anticoagulant) - 57 (High, this was most recent test, 2 weeks earlier was 31)
DRVVT Screen - 35 (borderline, this was most recent test, 2 weeks earlier was 20)
Hexagonal Phase Confirm - Positive
RBC - borderline low

Waiting on updated CBCs and Anti-Smith anitbody test.

Here are my symptoms:

Dry skin, itchy eyes (like sandpaper), excessive thirst
Extreme Fatigue
Brain Fog
Head rush feelings (in back of head)
Dizzy spells
Soreness in muscles and around joints
On/Off digestive issues (previously diagnosed (over 5 yrs ago) with IBS and ulcerative colitis (positive H. Pylori - but took Prev Pac))
Sensitivity to sunlight, but no malar/butterfly rashes
Nausea spells (even when not pregnant)

There are more symptoms, but can't think now.. need to leave work, but what do you all think - anyone with lab work like this.. anything is appreciated! 10 years of feeling like crap and no diagnoses - lots of brush offs!!

My mother is suggesting maybe I try Mayo Clinic - anyone go there?


04-23-2009, 05:34 PM
hi mommyof2in09,

first, let me welcome you to our group, and to congratulate on your precious child, and the one on the way.

I am not the expert on lab tests, but we have several member who are, and i am sure they will be along soon to answer your questions. In the meantime, you can look in the following threads to see some information on different lab reports.

All of these are under the heading "new members - introduce yourself"

"Need Advice" - page 4, see Saysusie's post dated 3/2/09

"Blood test results" - page 7, see Saysusie's post on 1/26/09

"Hi-im worried" - page 7, see Saysusie's post on 1/4/09

Hope these will answer your questions, please feel free to ask any others you might have.

Welcome, and i am glad you found us.

04-23-2009, 05:44 PM
Hello and welcome -

Happiness is a warm snuggly baby, isn't it?

So sorry you have fought the long battle toward diagnosis. Many here have gone through the same difficulty, often waiting years and seeing many doctors before reaching some sort of diagnosis or consensus...it can be so frustrating. Don't give up. As for your lab test results, you might check labtestsonline.com . There is a wealth of info at that site about what each test means. Of course, putting the results together is the key. This is difficult, even for physicians. There are many here who can give you some idea what it all means. I am sure they will be along soon to welcome you. In the meantime, keep fighting the good fight and enjoy those babies...

04-23-2009, 06:05 PM
Hi, I just wanted to welcome you. Just come in and make yourself a home. There's a lot of people here that can answer your questions.

04-23-2009, 07:57 PM
Thanks to all who have written back so far. I know it may sound odd, but I so just want a diagnosis that makes sense so I can come to terms with it. At this point, I feel ashamed sometimes for being so tired like there is something wrong with me as a person and not me as in my body. From my experience with my other illnesses even cancer as a child, there is a grieving process. Feeling awful and not knowing what it is is like a missing person who they never find.. I know that's a bad analogy but its late. I hate that I feel so dumb when I mix up words or lose place in coversation. People laugh it off but it iisnt funny for me. I write sales proposals for multi million dollar deals. What I say or write requires advanced communication. There is no room for prolonged brain fog. I'm off to sleep. Thanks everyone.

04-24-2009, 01:44 AM
Welcom Mommy! I hope that you find some sort of peace here with us. We have some truly intelligent members, and the rest of us are understanding and compassionate!! It seems like you are getting some good advice. We are always here for you, so please keep posting. Things will get better. The hardest part of the whole process is the waiting part. Once they give you answers it does get easier!! Always a friend ~ Angie

Angel Oliver
04-25-2009, 07:29 AM
Welcome and hello to you.


04-25-2009, 10:16 AM
Thanks to everyone who welcomed me to the forum. I have decided I am going to go back to the bad rheumy next week just to get the extra bloodwork he did. THen, I think I am going to try to have my ob or my perinatal specialist write me a prescription for Mayo Clinic so I can have them look at everything and figure out what's going on. I just want to be healthy!

I am learning a lot reading around in the forums and am so glad i found it!

04-25-2009, 09:56 PM
Welcome Mommyof2in09!!
Please keep us posted about your appointment and if you are able to get the referral to the Mayo Clinic. You deserve to know what is going on, or at the very least to know what they are suspecting!
Diagnosing auto-immune disorders is very, very difficult and can be a lengthy process (sometimes up to a year). In the meantime, we are here to help you and to answer your questions as best as we can. We especially want you to know that we understand and that you are not alone!

Peace and Blessings

04-26-2009, 06:33 AM
Welcome to this forumn i am faily new and this has been grat for me. So many nice people to answer your questions and welcome you from the bottom of their hearts. It is true sometimes they diagnosis you with different things till they settle on one because of the many syptoms that go along with all the dieases and all the different blood work sometimes you feel like a pin cushion but hang in there Bonita

04-26-2009, 01:30 PM
hi mommyof2in09

i went to the mayo in jacksonville in 1996, this is where i was diagnosed with fibrymyalgia...i was very impressed with my treatment, the compassion of the staff, the thoroughness of the whole process, and the professionalism of the drs.....in other words, i have nothing but good things to say about the mayo.

i think you should definitely get a referral.

good luck