Frightened, and no help from doctor for a while.

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218galeo
New Member


Date Joined Jul 2013
Total Posts : 3
   Posted 7/12/2013 4:29 PM (GMT -6)   
Hello all.

I've been browsing these boards for a while now, and I was going to refrain from making one of these posts until I got my test results and such back. But my doctor called today to inform me that the Lab was backed up, and it would be several weeks before I got them back. He also decided to tell me that he felt there's a good chance I have lupus, and to make an appointment with a rheumatologist right away.

So, I've been panicking before. Now, I'm really panicking. My anxiety is so high right now and I really need someone to help me calm down. shakehead

I'm 21. I was initially diagnosed with chronic urticaria in April, because my first symptom was hives all over the body, including facial/lip swelling, hands & feet etc. First allergist literally said "Yeah, I see this all the time. Your body is fighting against itself. These things can last up to 4 months. Bye." I was put on prednisone for a little over a month, and then I tapered. I also had other symptoms that included joint pain, and stomach aches/terrible GERD/reflux. They also disappeared on the prednisone.

This allergist also did some tests about a week after I got off the prednisone. I never got to see them myself, but according to him "kidney function was perfect", WBC was really high (it has since gone back into normal ranges) which he attributed to the prednisone. Sedimentation rate was high, which he said was consistent with an infection, and that I was slightly anemic, just very, very slightly.

But, when I got off the prednisone, everything flared. I had swollen feet and hands that I could not use, hives everywhere, fatigue, acid reflux.

So, I went to another doctor for a second opinion. This is the doctor that thinks I have lupus, and the one who said my tests they ordered won't be back for a really long time. However, they did do a few in house, which revealed...

1:160 Titer ANA
Speckled
Sed rate was still high
Slightly anemic
Antibodies for cytomeglovirus (indicating recent past infection)
Antibodies for epstein barr virus (indicating recent past infection of mononucleosis)

WBC normal
RBC normal
platelets fine
all the thyroid stuff normal.

no weight loss (actually can't get rid of the weight i gained on prednisone!)
no hair loss

So as you can see, I'm very concerned.

A couple things I will note.
-no one has ever told me I was anemic before, so this is new.
-i've also never had mono before, despite being tested many times (I'm a college student...duh!)

I also looked up that list of 11 symptoms, and only "arthritis" and "positive ana" test apply to me.

I know you all don't consider yourselves experts, but I may give myself a heart attack if I don't get some commentary on these symptoms.

Currently taking Prilosec, Zyrtec and Zantac.

So...does this sound like lupus to any of you?
smhair

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/12/2013 7:53 PM (GMT -6)   
Hi there first I'm going to tell you to take a huge deep breath and calm down. I've had lupus since I was 23 yrs old, I'm now 48. I am one of the unlucky ones that has lupus severely.

Yes, some of your symptoms do sound lupus like, HOWEVER, they could be related to many other things. A positive ANA does not mean that you have Lupus. Also, without 4 of the 11 symptoms you will not be Diagnosed with lupus or even treated I'm thinking. Most Doctors won't go on just two symptoms of the four.

Lupus is know as the disease of 1,000 faces and it's very hard to confirm it. I agree that you should see a Rheumy, they are the one who are the best at determining if it's lupus or not. The slight anemia may or may not be related to lupus. My daughter has anemia and it's due to heavy monthly cycles, not an auto immune disorder. She also has had a positive ANA of 1:640 since she was 8 she's now 20. The last test was negative. An ANA can be positive if a person is sick with a virus.

Try to relax and wait and see what your labs show and what the Rheumy has to say. Even if you have lupus, it isn't a death sentence. Patients vary some lupus patients are well enough and have mild enough symptoms that they do not require medication. Then there are those really sick like me I take a lot of medications daily. I will say this though, from about age 23 until I was 38 my lupus wasn't being controlled by anything other than plauqenil and prednisone. I started those in 2001 when I was 36. Prior to being 36 yes I had bouts of of being ill but I went to college, moved a lot with my husband and had a very active child. It took my Doctors 13 years before they said yes I have lupus and started treating me.

Since 2005 I have really slid downhill and I've acquired many other issues. I've had a good life even though I've had lupus. Yes, it's very difficult now, but my earlier years were great. I've been married 28 years and have a beautiful daughter, and had a good career. I'm fulfilled in my life and I'm more than ready to move on to whatever is next.

Try to remain positive and relax, good luck with your appointment and I truly hope you don't have lupus. Please let us know what the doctor has to say. If you have any other questions please ask away.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Cateracts, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/12/2013 10:09 PM (GMT -6)   
I agree with Barbara, take a deep breath and try not to overthink this.
It's normal for testing to take awhile. I had to wait 3 months for answers to my testing.
I hope you don't have to deal with this annoying disease, but if the answer is yes make sure to come back and talk with us.

Hang in there.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

218galeo
New Member


Date Joined Jul 2013
Total Posts : 3
   Posted 7/13/2013 1:32 PM (GMT -6)   
Thank you ladies for your comments!


*breathes into paper bag*

I'm a little more calm now. I've been making myself some tea with is relaxing.

I think the worst part of this is bouncing from doctor to doctor and no one really being sure what the problem is.

evastar
New Member


Date Joined Jul 2013
Total Posts : 2
   Posted 7/17/2013 6:17 PM (GMT -6)   
Hello!  My name is Yvette and I am new to the forum.  Don't panic just stop and regroup change your whole outlook on this disease.  Of course at first its crazy dealing with it but what I can tell you through my journey change your mindset and start researching this disease.  Your doctors won't understand about Herbal remedies. There is always another alternative.  I change everything the way I eat what I drink what I input in my body.  Embrace a Heathier Living.  Cause its only one of you and you have to live it to you can't live it no more.  And failure is not a option.
Researching Chinese Medicine and what really good that I use that control the lupus is Resihi Mushroom.  Look it up start off slow don't take alot of herbs at onces just find one that works good with your body and you will be on your way.  It has work so well for me that I am on all natural supplements. Your doctor only know what they know.  Take it in your hands to learn how your body works.  Stop letting others have full control over your body study yourself and figure out what naturally is good for your medicall issue. 
 
I know you can do it.  Take it one day at a time write it down and watch the progress.
 
My name is not Defeat My name is Victory!

218galeo
New Member


Date Joined Jul 2013
Total Posts : 3
   Posted 8/15/2013 5:59 PM (GMT -6)   
I'm coming back to update this thread.


A million doctors and a rheumy later, I still don't have a definite answer.

I've gotten many many tests done, and I continue to test negative for any specific antibodies (not that they all are always right, but i have consistently tested negative for lupus coagulation etc. RA antibodies etc.), yet still have hives everyday, anemia, and my other symptoms.

The rheumy I have now just put me on Plaquenil. I've been on for two days, and have started to see a disappearance of hives, so I guess that's good.

Post Edited (218galeo) : 8/15/2013 5:05:29 PM (GMT-6)


Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 8/15/2013 9:57 PM (GMT -6)   
Glad you finally got some Plaquenil and that the hives are disappearing! Yay!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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