new here - just saying hi!

Hi Everyone,

I've always known I had Reynaud's - both my mother and maternal grandfather have it - but last year I started with symptoms of low grade fever, fatigue, joint and msucle pain, headaches, brain fog, loss of words, and other various bits and pieces.  At first pcp and I thought Lyme (I'm in a high risk area), but that came back negative.  However, my ANA was really high (not sure what that initial result was).  My pcp didn't seem concerned and said to wait it out until my symptoms got really bad, then do something.  (eek)  Then I went to my midwife for a yearly check up, mentioned the high ANA and she was horrified that I had been referred to a rheumi.  So I started going to someone in October of last year.  I don't have copies of my tests but I do know that my ANA is consistantly 1:1280.  My symptoms aren't awful.  I don't feel terrible, I just don't feel good.  And it seems to be worse at this time of year.  I'm not sure whether that's because the heat makes it flare a bit, or because it's the summer.  I'm a Montessori middle school teacher so I work about 800 hours and I don't let myself get sick.  I also have a beautiful, shining 2 year old who keeps me busy in the best possible way!

My rh. hasn't given me a firm diagnosis of lupus, though she believes that's what it wil be.  I defeinitely have the Reynauds and recently was diagnosed with vitiligo (loss of pigmentation).  I'm really really hoping the vitiligo doesn't spread.  At the moment it's just the insides of my elbows, which I can deal with, but the vain part of me would rather it stick to that!  I am on plaquinil (400mg/day) and a multivitamin.  I'm in therapy, doing yoga, taking my vitamins, starting with a naturopath in two weeks and will have new blood tests done in a week or so (obviously, I"m also sticking with my rheumatologist). 

So there I am in a nutshell.  I'm looking forward to learning more and keeping this under control!

Thanks,

Lis

*please forgive any spelling issues, typing with a 2 year old on my lap!*

Hi Lis, and welcome to the forum. You've come to the right place! This is where I came when I was in Lupus Limbo and there are plenty of folks who are in the same place you are. IALupus is right. Most doctors are so reluctant to put a diagnosis of lupus in your chart even though they "know" you have lupus, as it appears your rheumy does, because once it's on your chart, it will never come off. And once it's there, it becomes very difficult, if not impossible, to get things like long term care insurance, life insurance, and in my case, I had to go to the state , because I'm self-employed, to get health insurance. They have an insurance group for people who can't get health insurance through conventional ways, so I get my insurance through them. It costs me $850 a month, with a $2,000 deductible and then it's 80/20. Like you, I wanted someone to confirm that I had lupus. I knew I had it and had known for years that I had it and was so frustrated that none of my doctors would confirm it. I felt as though no one believed I was really sick.

What I'd recommend to you is that before you get a diagnosis, you run out and get the most life insurance you'd ever want, and get a good long term care insurance policy. Fortunately I had already done that.

That's all completely off the subject, but your post just took me back to my situation a few years ago.

You'll meet a lot of wonderful, supportive, and knowledgeable folks here. We all come here to ask questions, to support each other, and to vent. I'm happy you're here!

Pat

Welcome to the forum Lissys!! You've found a great place for info and understanding. Blessings!

Hi Lis and welcome. Everyone has given you great information and I don't have a lot to add. It can be really hard emotionally to be in limbo - I was there for several years and it really got me down at times and also made me doubt myself a few time and wondering if it was "all in my head". My rheumy still doesn't write lupus in my chart (he writed UCTD), but he verbally told me I had lupus and that was enough validation for me. I agree with Stacie that the most importatnt thing is a good treatment plan that will keep you functioning the best that you can. Like everyone said, this is a great site and we are all very supportive of each other. It's nice to have a place to come where people understand and can relate to what you are going through. It sounds like your 2 yr old keeps you going. My youngest was 2 and my oldest was 6 when I first got sick with lupus symptoms and they have always kept me going. I'm glad you joined us and I look forward to hearing more from you.

I just wanted to welcome you to the forum. I'm sorry you are dealing with this, especially with a beautiful, energetic baby! It's sounds like you're in the hands of a great rheumy. For most of us the diagnosis doesn't come quickly! Report any and all symptoms to your rheumy! God Bless you, Judy

Hello, just wanted to add my welcome as well.  I hope your diagnosis comes quickly.  Getting on the right mix of medications as soon as possible will benefit you greatly. Hopefully keep you feeling as well as you can.

 

Ginny