View Full Version : Hi from Jen
My name is Jen, I'm in my late 20s, with 1 child. I have had 7 miscarriages, including a twin/molar pregnancy this past March.
It seems after I miscarry I develop a Lupus flare and did so after the birth of my daughter as well.
I am waiting to see my rheumatologist on the 13th of June and am surviving on prednisone and good will at the moment. This flare is particularly bad giving me limited mobility of major joints.
I'm getting horrible hot flashes at night and cannot sleep at all.
My ANA is constantly negative, among a few other blood tests, which is annoying my GP and he insists I fit the Lupus SLE criteria perfectly otherwise.
I have this horrible fear that when I see the rheumatologist he will laugh and tell me nothing is wrong and I'll feel this way forever.
So that's me in a nutshell. I look forward to learning as much as I can.
05-08-2007, 03:37 AM
Welcome to the board! I am sorry to hear that you're having such a hard time. I hope when you see your dr he is able to help you. WE all know how frustrating the dr visits can be. I hope you come to this site often for support, I think you'll like it. Good Luck & keep us posted on how everything turns out!
05-08-2007, 08:03 AM
Hello. Jen and welcome. I'm sorry you are having such a difficult time, and especially sorry for the repeated miscarriages you've experienced - it must be heartbreaking. Have you ever been tested for antiphospholipid antibody syndrome? It is a blood clotting disorder often associated with lupus that can lead to recurring miscarriages.
Have you contacted the rheumatologist to see if they can fit you in earlier, or at least put your name on the wait list for any cancellations?
I'm glad you found this forum, and hope you find strength and support here.
05-08-2007, 02:04 PM
Welcome to the Forum! :D I'm really glad that you found us! :D
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
I am SO sorry to hear of your repeated miscarriages, but am glad that you were blessed with a beautiful daughter. I, like Marycain, am wondering whether you may have Antiphospholipid Syndrome. Do you know whether you have had a blood test for this?
I also have a negative A.N.A. Test, by the way. :?
Keep well! :)
05-09-2007, 06:48 AM
Welcome to the board, So sorry to hear about your ordeals. Remember you are among people who understand. Lots of love.
05-10-2007, 07:12 AM
Hi JenP :lol:
Almost all persons with lupus have a positive test for ANA. However, it is possible for a small number of people to test negative for ANA and still have lupus. If you have negative ANA and yet still have some symptoms and signs suggestive of lupus, your doctor probably should be very carefull to evaluate you for a large number of conditions that can have a positive ANA test. Many of these conditions that can mimic lupus and have a positive ANA test include; mixed connective tissue disease, undifferentiated connective tissue disease, scleroderma, myositis, rheumatoid arthritis and several others (including the one mentioned by Marycain). Some times, it may take a while before a definate diagnosis can be made, because no two cases of lupus are exactly alike. Signs and symptoms may come on suddenly or develop slowly, they may be mild or severe, and they may be temporary or permanent. It can be quite frustrating and can make the diagnostic process very lenghty sometimes!
Most patients with negative ANA will have Anti-Ro (SSA) which may indicate secondary Sjogren's Syndrome; and anti-La(SSB) which occurs mainly with primary Sjögren's Syndrome. Also, there are frequently other antibody markers of lupus present, such as cardiolipin antibody, anti-smith antibody, and DNA antibodies.
When a person satisfies the criteria for systemic lupus erythematosus (lupus), but has a negative ANA, the condition is referred to as ANA-negative systemic lupus erythematosus. ANAs are negative in approximately 5% of patients with lupus.
I hope that this has been helpful to you, I wish you the very best!! Let us know what your doctor's think and how you are doing.
Peace and Blessings
Pretti in Pink
05-10-2007, 01:50 PM
Welcome Jen- I'm sorry to hear about your losses. You've joined a great cyber family that will offer you alot of support and information. I hope all works out well with the doctor and things will begin to look up.
05-10-2007, 04:05 PM
Hi Jen. I too have a negative ANA. I was diagnosed mainly because of fevers and photosensivity. My doc said those symptoms ruled out many other diseases with similar symptoms. 2 doctors felt I had Lupus but only one was willing to treat me for it. I also saw many doctors. Sorry to hear about your miscarriages and I hope you get some answers soon! Don't stop until you find someone who listens. It took 3 years before I got so sick I could hardly function and losing my job before I found a doctor who listens and seems to actually care. The first specialist I saw told me to eat more broccoli and raw veggies and that's why I had all my symptoms. There are some real crazy docs out there!
09-28-2007, 05:09 AM
:multi: :smilecolros: :onfire: :smilecolros: :multi:
Looks like you got here before me.