View Full Version : Intro and hello.

06-25-2009, 09:01 AM
My name is Lisa and I am in the process of a lupus diagnosis. It is taking SO long and I have no idea how long to expect...:(

I have a positive ANA with a low titre (1/320), my sed rate is 35 and my c-reactive proteins is 16.5. I also have elevated GGT (47).

I have a faint butterfly rash, ankle pain, hairloss, headaches and extreme fatigue. I am also irritable and have a terrible memory.

I am a registered massage therapist and homeschooling mom to two boys, aged 4 and 6... some days I just can't get going and I feel like a horrible mom.

I woke up yesterday feeling tired. My legs and feet ached as soon as I stepped out of bed and today is worse. What is happening?

06-25-2009, 10:13 AM
Hi Lisa,

Welcome to WHL, you came to the right forum, to get answers, friendship and understanding. It sounds to me like you may have lupus. If it is, you will experience new symptoms all the time.
I was diagnosed 2 years ago, with Lupus SLE, RA and fibro. I still get new symptoms all the time, numbness, fatique, joint pain, tissue pain and much more. Hopefully you will be diagnosed and put on the right meds.


06-25-2009, 12:09 PM
Hello Canadian Mama,

My name is Rob, and I was diagnosed with SLE five years ago. You should feel right at home here as we have quite a few members from Canada. You'll find some great people with many years of experience living with Lupus here. There are many people like you who are waiting for a diagnosis. It can take an awfully long time for some.

At the top of each forum page you'll see a bunch of articles about almost every aspect of the disease. It's solid info that can help you know what to expect. And of course, any and all questions are welcome here. Welcome to our group!


06-25-2009, 12:59 PM
Hello Lisa,
Sorry to hear what you are undergoing but I just wanted to extend a warm welcome to the site. since joining in March I have made numerous cyber friends who are extremely supportive and helpful. I hope you find the same.

06-25-2009, 01:12 PM
hi canadian mamma,

so sorry about your diagnostic process. This is such a scary and overwhelming part of our life with lupus. When do you see the dr. again? Until then, i recommend that you browse around this forum and read about the different symptoms that we experience. Make a list of all symptoms that you have or have had in the past. Take this with you to your next appointment.

When your dr. diagnosis you, he/she will probably start you on Plaquenil. Some people get really good results from this med, but it can take up to 6 months for it to work.

If you continue to feel worse and your appointment is far away, you might want to call the drs. office and let them know, maybe they can get you in and help you get some relief.

I know you are frightened, this is a frightening disease, but we are here and we will help you overcome any obstacles that you face.

welcome to our family of the sky.

06-25-2009, 05:57 PM
hi Lisa,

Like you, I am new to the site and am awaiting a formal diagnosis. This forum is the best thing there is for a bad mood, feeling bad day. welcome!


06-25-2009, 06:48 PM
just want to say that i am so glad to have others to talk with and that understand what we are all going thru!! :cute:

Angel Oliver
06-26-2009, 08:47 AM
Just to say hi and welcome,yet sorry about what you are going through and so understand the frustration n fear. We are all here for you,so ask us anything,tell us anything,we will be here to support you.

lots of love

06-26-2009, 09:35 AM
Welcome Lisa and ((((hugs)))). Hang in there and go easy on yourself. You're not a horrible Mom.

I hsed both my kids. Both graduated last year. I'm already missing it. Those years are some of my sweetest memories. I had a lot of pain and strange illness that was never explained until lately...and I still have no real diagnosis. (They're leaning towards lupus.) Although hsing is a tremendous job, it was the sweetest time in my life.

06-27-2009, 01:20 PM
Hi Lisa!!!!! Welcome to our family! I am sorry you are going through a tough time right now. I remember struggling with no diagnosis for years and it was so emotionally and physically challenging. It was hard to find relief from the symptoms and life just seemed so sad. We have all been there and some of still are. You are not alone anymore!!!! I think it is amazing that you home school your boys and it must be difficult on the bad days. You are an amazing mom even when you feel down!!!!! Your boys are lucky to have someone who cares for them like you do. Please keep talking to us and jump in anywhere on the forum! We would love to hear more from you :angelic:

06-27-2009, 02:12 PM
Thanks for the all the kind words.

I am feeling a bit better today... still tired.

I have been taking naproxen for the joint/muscle pain and it has helped a little.

Looking forward to getting to know you all.

Angel Oliver
06-27-2009, 04:11 PM
Oh im so glad you feel a touch better.Every day is so unpredictable.You rest and know we are always here for you.


06-27-2009, 04:13 PM
Hang in there hun.

I was diagnosed originally in November 2008
Then downgraded to something else in December by a Rheumatologist who... well, lets just say the "professional" was not satisfying the analyst within me or making any kind of logical sense -
I moved all of my specialist care elsewhere and established myself with a very nice Rheumatologist that for the most part seems to operate logically and consistently.

Long story - several hospitalizations and a bypass later I went to go see my trusted Rheumatologist told her the Plaquenil was working out great and I had an 80% improvement since my last visit with her and of course the bypass surgery. The visit diagnosis of SLE was on the diagnosis sheet sent to my insurance company and the code is 710.0. I developed some problems in response to the Texas heat so I emailed my Rheumatologist to ask her some questions about current symptoms and some other treatment options for the summertime (its usually very bad time of the year for me - though its the first summer I've been on Plaquenil. She said I had UCTP and I didn't have SLE. Then I went to make sure I wasn't crazy - SLE was the diagnosis she made on the billing sheet -
So I sent her a message - (Ya'll have to understand that I've already had deal with being diagnosed with Lupus twice by this point and had accepted it and moved on) and asked her why she just told me I didn't have SLE but then diagnosed me with SLE to my insurance company.

If you haven't figurd it out by now a diagnosis of SLE to your insurance company can be detrimental. I was happy with UCTD diagnosis as the treatments usually the same and its kinder to your health insurance. SLE diag usually means a lifetime of insurance hell... I sent a message to her asking about this and suddenly I have an appointment in less time than I can get my house cleaned. I have already seen my GP and started on a 10 day dose of 30MG predisone.

I understand SLE is difficult to diagnose but sh&^% or get off the pot, right? If the treatment works and you're scared of prematurely diagnosing your pateint with SLE - then put the right effin diagnosis on the sheet - don't be like some OBGYN's and send the pap smear results home with the diagnosis of "Possible Cancer" on a freakin Friday an then tell her that her pap was normal on Monday...

/end rant.. whoo! My steriods are kickin in !