View Full Version : Waiting on Rheumy appt. No diagnosis yet.

01-08-2010, 11:49 AM
Hello, my name is Erin. I am a 27 year old, caucasian/native american female. The last two years have been a real struggle trying to figure out what's wrong. I would like to get your opinion as to what you think it might be. I am pretty sure it is SLE, but thought while I wait for my rheumy appt on Jan. 22nd I would get an opinion for those of you struggling with this disease. These are the results from my labs taken on 12/18/09...

ANA Titer-1:40-------Normal-<1:40
ANA Pattern-Speckled--------Normal-No Pattern
Anti-DS DNA-2.8----------Normal-<5.0
EIA Interpretation(Whole lupus panel interp.)-20-39 Weakly positive
WBC(white blood count)-5.0---------Normal 4.5-11.0(Not out of normal range but low considering I had a 103 temp and felt like my bones/joints were breaking)
MCH(mean corpuscular hemoglobin)-31.4-----------Normal-27.0-31.0
Complement C4-22-------Normal 16-47(on the lower end of normal)
C-Reactive Protein-23.7-----------Normal-0

About 2 years ago I broke out in the erythma nodules and started feeling unwell. This is when it all started to go down hill. At that point 2 years ago my ana was negative.

These are my syptoms...
Malar rash (Get it when stressed, exposed to sun or heat, and sometimes for no apparent reason)
blocked follicles rash on arms, shoulders, legs
photosensitivity(always break out in a blotchy rash on sun exposed areas, a few years ago I used to be able to spend hours in the sun with no effect)
Sensitivity to hot and cold
Numbness tingling in nose & mouth area
Numbness, tingling, electric feeling in fingers and toes
Heart palps.
sensitivity to sun
joint swelling, redness, stiffness and pain
general weakness
weakness in arms and legs when doing simple tasks(hard time walking up and down stairs, legs and knees weak and shakey)
Infertility(several early miscarriages and 2 failed ivf's)
unexplained fevers
frequent illness
swelling around eyes
fingers and toes turn white and purple when cold
mild hair loss
erythma nodules(lumps under skin on legs, come and go)
Feeling like I'm in a fog, forgeting simple things like words to use in a sentence(doh)
very dry skin
litttle red flat dots(like broken blood vessels in random spot i.e. arm, eyelid, legs, fingers)
Eye pressure elevated at last eye dr appt.
frequent urgency to urinate
difficulty swallowing, feel like something is stuck in my throat

I've been Googling like crazy and that is how I found this board. There is so much conflicting info out there. I know the Rheumy will be the deciding factor, but still would love to hear your opinions. So based on all this info. What do you think?

ETA: I have added some pics in my albums to show some of the symptoms.

Angel Oliver
01-08-2010, 12:07 PM
Welcome Erin and wow yes you sound like me on many of your symptoms.I was diagnosed then undiagnosed this time last year.But you keep on fighting until they give you a proper diagnosis.I was gonna sit back and leave it,glad i fought as now i have been diagnosed with Fibromyalgia,Sjogrens,Raynaurds, M.E and other ailments that come with it.Im now being tested every 6 months.I have most of your symptoms and a few more...asthma bla bla.Im so glad you found us.Look around in the forum for the ''stickys'' they have answers on them you are looking for.Also other members will be here soon to welcome you and help you out where they can.They are all lovely and understanding here so you have found a great place. Catch up with you soon.

Lots of love

01-08-2010, 12:16 PM
Thank you for the warm welcome, Amanda. I cannot wait to get some answers from the rhuemy. I have felt like a hypocondriac for the last 2 years. I am hoping to finally get a diagnosis and start treatment.

01-08-2010, 04:04 PM
Hi Erin,

Welcome to WHL.
Your symptoms and pictures look like lupus to me, but you will hopefully find out when you see your rheumy.
You are not the only one, who feels like a hypochondriac. Most of us either felt this way or made to feel that way, by doctors.
If you read through some of the posts here, you will see what I am talking about.
I am glad you have found our awesome forum, we are here to listen and give advise. It has helped many people, including myself. Plus I have made alot of friends, who understand what I am going through.


01-10-2010, 10:55 AM
Hi Erin;
Just wanted to add my welcome to those that you've already received. As everyone else has said, it does sound like you are suffering from some type of auto-immune/connective tissue disorder. It may take a while to get a definite diagnoses because all of these disorders are very hard to diagnose. However, we are here to help you understand the process, the tests and what the test results mean, the medications and their side effects, and how to make lifestyle changes that could help you to manage your illness.
I am glad that you found us and that you decided to join us. Welcome to our family:laugh:

Peace and Blessings