lupus diagnosis??

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velvetmoon
New Member


Date Joined Mar 2008
Total Posts : 3
   Posted 3/16/2008 1:48 PM (GMT -7)   
Hi I am a 32 yr old female currently 18 weeks pregnant with my first baby. I have been sent to a rheumatologist and high risk obgyn due to abnormal blood tests and symptoms. I have the following:

positive ANA 1:16 with speckled pattern.

false positive rpr (syphlis test.) (seen in SLE)

raynaud's phenomenon.

arthritis in both knees and neck.

probable photosensitive according to doctor with 6-8 weeks of nausea/vomiting over the last two summers.

mild anemia.

hx chronic uticaria/hives.

pleuritis (according to doctor)

chronic mouth ulcers (canker sores) that come and go.

morning stiffness where it hurts to breathe in.

peripheral neuropathy..(numbness/tingling hands/feet) comes and goes.

fatigue.

The rheumatologist is currently running additional bloodwork..my question is don't my symptoms/test results already warrant/confirm a lupus diagnosis according to the at least 4 out of 11 criteria to diagnosis?? Thank you all so much for any info on this.

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/16/2008 5:18 PM (GMT -7)   
Velvet,
Welcome to the forum. Congrats on your pregnancy. I'm sorry you are having to deal with this at what's supposed to be a very joyous time in your life. Lupus is definitely not a cut and dry disease. It tends to be very hard to diagnose and other conditions can "mimic" it. It's probably a good thing that your doc wants to run other test. He/she is probably trying to rule out other things before diagnosing. I suggest being patient with your rheumy. I rather them do a zillion test than to discount your symptoms as has been the case with alot of the people in this forum. Take care of yourself and the baby and let us know how your test results come out. I know it's a very frustrating process and it seems like no one gets in a hurry! Hang in there and God Bless you, Judy

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 3/17/2008 3:49 PM (GMT -7)   
It is good that your rheumy is running more tests.  Your symptoms indicate lupus and you might have that but you could also have a connective tissue disease which includes symptoms of lupus.  Treatment is usually the same but not always.
 
I was first diagnosed with lupus but eventually found out that I have mixed connective tissue disease which is lupus, scleroderma and polymyositis.  The main thing was that it triggered my docs to be much more aggressive in treating me. 
 
Regardless of what is found or not found your doctors are doing the right thing.  Many have a terrible time getting their doctors to do the necessary tests to make a positive diagnosis.
 
Sorry you are sick but it sounds like you have good doctors.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 3/18/2008 5:55 AM (GMT -7)   
Welcome to the forum Moon!!! Big hugs for you and your baby!!

Try not to worry too much while the docs process all this info. A good rheumy gathers LOTS of information before the do any diagnosing. It really IS a huge puzzle to figure out.

One thing they will/should be checking is your anticardiolipid antibodies and antiphospholipid antiboidies. This antibody causes thick/sticky blood. When you are properly diagnosed it is easily treated.

You've found a great place to come for information and understanding.

Make sure to keep us posted!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/18/2008 6:43 AM (GMT -7)   
Hello and welcome. I don't have a lot to add to what to others said. Hopefully you'll have a diagnosis soon and you'll start to get some treatment for your symptoms. There are probably some meds you won't be able to take while you are pregnant - congratulations on your pregnancy.

Please keep us posted on what you find out.

Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/18/2008 8:13 AM (GMT -7)   
Welcome Velvetmoon, it sounds like your doctor is right on top of things. There are many factors in dx lupus, the doctors want to 100% certain before handing down a dx of lupus... for insurance purposes, etc.

Congrats on your pregnancy, take care and keep us posted on how you are doing.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


HisWill
Regular Member


Date Joined Mar 2008
Total Posts : 43
   Posted 3/18/2008 6:53 PM (GMT -7)   
Hi Bill..I have been posting and reading other posts in this forum about ostomies. I looked here under the lupus heading to see if anyone here had scleroderma or an overlap of other autoimmunes..MCTD. I do have scleroderma and MCTD. Lupus is one of the overlapping illnesses. Anyway..because of my problems with sclero and pain meds..I have chronic constipation and a full bowel. I have tried many different regimens to evacuate the stool in my bowel but after every try, the xrays show that my bowel is full. My doctor suggested a subtotal colectomy/ileostomy. I have gotten 4 different opinions and they all agree that I do need this surgery done. One of my concerns is if I should try to have is one type of surgery which I believe it is called the J pouch. My doctor said that I am not a candidate for this type because of motility problems. I guess I am wondering if how SD has affected you. What type do you have? I have CREST. And the most problems that i have are my digestive system, both my upper GI and lower. I would love if you could share your story with me. I would like to talk to someone who has something similar to what I have. And to see if they had the surgery that I need to have done. Thank you in advance for any input you are willing to give. Bless you! HisWill

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 3/18/2008 8:10 PM (GMT -7)   
It is a matter of debate just how scleroderma has affected me.  I had organ involvement: kidneys, liver, entire GI tract.  Polymyositis totally crippled me.  Lupus hit my joints, kidneys.
 
Some of my swallowing problems might be due to scleroderma as well as some of my other GI problems but that is all open to speculation.  Any of the 3 diseases could have caused my problems.  PM was the main culprit by weakening my muscles but I believe that SD has also had an influence in my ability to swallow.  SD deposits collagen and is a process tantamount to scarring.  There is no reversing the damage.  There was concern that I had pumonary hypertension but a catherization showed I did not.  My breathing problems were just being caused by weakened diaphragm muscles.
 
Polymyositis was the worst, then lupus and scleroderma is in the questionable catergory.  PM caused me to have barrets esophagus and I have had some difficulty with absorption in my intestines but that could be due to any of the diseases. 
 
My biggest challenge was not SD but PM and it took 40 lbs of muscle in a week and left me a quadriplegic who could not swallow.  I have been able to recover and now lead a fairly active and normal life again.  No one thought I would ever walk or swallow again.
 
My bowel funtions have been fairly normal except when I had a feeding tube for several months.  Even then I had daily movements and felt fortunate not to have other problems. 
 
Let me know if you have other questions but my experiences were quite different from yours.  No two mctd patients will have the same experiences...it is a rare, complicated and unpredictable disease.  Lupus is bad enough but add the other two and it is a nightmare.
 
I can't help you with the recommendation to have surgery.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 

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