Hi, I haven't formally been diagnosed, but my dermatologist is pretty confident that I have Lupus. I am scared! I don't know anyone with this disease, and the ANA was 1:640, so he said that is pretty high for a false positive.
I am scared because I went to him for slight hair loss, no rashes. Looking online at the symptoms of lupus, I am nervous because I have had a little shortness of breath, but I attributed it to gaining 25 lbs. this year and being out of shape. I don't really have any pain, which scares me to think this may have already affected my heart/lungs/kidneys.
I am an anxious person (worrier, inherited that from Mom!) anyway, so I'm thinking that is adding to the shortness of breath. I feel like my future is dismal. I have 2 children ages 6 and almost 3. I see a Rheumatologist next Wednesday. Dermatologist called last night at 8:30 pm and drop this on me. Needless to say I have not been able to do anything but worry since.
I'm don't usually lay out my feelings online, but I'm feeling desperate and uncertain. If anyone has any advice or recommendations I ask the Dr. please let me know!!
I'm Barbara also. I was diagnosed with probable lupus almost 6 years ago. My 1st ANA was just 1:40, but 6 weeks later when I was feeling better, it was 1:800. Bummer!
There is lots of good information, ideas, and we're all in the same boat, so there's understanding, too. Lupus can be bad, but for most of us, fatigue and arthritis are the biggest physical bothers. The biggest lifestyle bother is the real need to avoid sunshine becuase it will make all unpleasant symptoms worse. Plan to wear sunblock spf 35, a big hat, long sleeves and slacks. My rheumy said you can safely be outside when your shadow is longer than you are tall. Another thing to plan for is the need for a nap sometimes.
Be sure to read the 2 stickies at the top of this thread because they are very helpful and enlightening. Read the other entries, too. You'll find that lupus is something you can live with.
My granny used to say "Don't borrow trouble." Your future is not all doom and gloom. Wait and see! Try to remember my granny's words, too. She was a very practical sweetie!
Thanks for the warm welcome Barbara! I'm trying to keep positive, but I'll I feel like doing is crying! Has anyone on this board been diagnosed without having joint pain? It seems like that is the major problem, from what I've read so far. I know I still have much to learn!
Welcome to the boards. There will be much information and support here for you. The panic you feel is perfectly normal but Lupus is not a death sentence these days. Please be assured that when your diagnosis is complete and the dr. gets you on some medication, odds are you will live a long and fairly normal life. It is recommended to wear lots of sun screen and lightweight long sleeves outdoors. You may have to begin to plan your days a little more so you can pace yourself if the fatigue end of this disease sets in.
I have been recently diagnosed and all I have read says that most Lupus sufferers usually live mostly normal lives when treated. There are exceptions of course and your complete diagnosis will tell you more.
I hope your Dermatologist has referred you to a Rheumatologist who will get other tests done and complete the diagnosis for you. In the meantime, there is much comfort for you here and in your friends and family. Share your fears, accept the comfort of others. Lastly, there is especially comfort in prayer.
Hope you feel better soon.
May God Bless and Keep Us All
Patience 50
Hi! First of all don't worry. I thought when Lupus was first brought up to me, I was going to die, but have since understood that it is a totally livable disease. With some life adjustments. Don't get thrown off my all those statistics on the internet. The studies about life expectancy are not good, and the stats not valid. So if you do have Lupus, breathe because your life will not end. It's not like 20 years ago, and treatment is always getting better.
I too am in the diagnosis process. It is a long road. I heard that a positive ANA could also be other things such as Rheumatoid Arthiritis or thyroid auto immune diseases.
One of my first symptoms was hair loss. Can I ask you what your hair loss looks like? Is it in bald spots around your scalp or the hair is just thinning all over. When the hair falls out do you notice the root? I am only asking because I have gotten mixed reviews regarding my hair loss. I am having what is called diffuse shedding where the hair just sheds all over the scalp like a dog. But I noticed that my root has basically disapeared when the hair falls off. I see it still there, but it is very very small.
Anyway good luck and keep writing. If you stay on this board it is really helpful and you can see how people adjust to this disease, and are living really well with it. Good luck!
Kathie
New and scared 
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