View Full Version : I'm New and Need Advice Please

11-17-2007, 04:41 AM

I hope I'm posting this in the right area.

I'll give you a bit of background: I'm 44 years old, married 25 years and basically live a very calm, happy life. I have been fighting symptoms for 3 years. Before this started, I never knew a sick day and could run cirlces around anyone!! And then, something hit me like a ton of bricks. It started with EXTREME fatigue. I spent three months doing nothing but coming home from work and going to bed. It was December, and I did not even put up a Christmas tree or do any shopping. Then it got to the point that I did not feel like I had the energy to lift my arms.

I went to my new doctor. This is where I was at a huge disadvantage. My primary doc of 20 years had just passed away with cancer. My meer presence would have alarmed him, as he knew me well and I NEVER go to the doctor except for my routine exams. So, I had a new doc who did not even know my name....

Blood tests were ran and all came back fine except for an elevated ANA count (1:160). They repeated the ANA test to make sure it was not an error and again, it was positive. She ran the further tests that came back okay and pretty much dismissed it. After about a month, I started feeling better. Months later I started developing rashes on my chest and neck, fevers, fatigue and painful, swollen joints. She did another round of blood tests and my ANA count was higher (1:320). She followed up with additional blood tests and sent me to a rheumatologist. The rheumy blew me off and said I was fine.

I have not been back to the doctor in about a year, and I can tell you the that this IS NOT NORMAL for me. I know my body, and I know how I feel. Before I even went to the doctor the first time, I told my husband that at times, I feel like every cell in my body is sick. It truly feels like my body is waging war on itself.

Thankfully, the past four months I have been having pretty good days. But now, I feel it again, and this time, I have pain in my upper back around my lungs. It may be time for me to find a different doctor.

Any advice?

Thanks for your time!

11-17-2007, 12:35 PM
Welcome glassgirl!

Your story sounds so familiar - many of us played "wheel 'o' doctors" before we found one who listened, and who was able to help us understand. I encourage you to look around for a new rheumy, find one you feel you can talk to.

My first rheumy was SO bad, I "fired" him before I was home from the visit. The second was wnderful - associated with a large teaching center, he'd been the physician my primary doc had studied under on his clinical rotations. I've since moved on to a third doc - only because the drive was so far to that second one.

Don't settle - find someone you trust. Even if you're with an HMO you have choices - all that switching around that I did, I did with an HMO.

You're here on a board that's filled with people who understand - we've known the fatigue, the pain, the frustrations of not having a diagnosis, or of having symptoms that seem out of line with the numbers from the lab tests. And here you'll find support, understanding, knowledge, comfort and camaraderie.


11-18-2007, 05:05 AM
Thanks Hatlady for the reply. Should I have posted this in another section? I did not post in "Newly Diagnosed"...well, because I'm not diagnosed yet. PCP is just "watching" me. Thanks for the encouragement to find a new doctor.

I did not mention that I have a fantastic job, wonderful employer. I have reduced my hours down to four days a week, as five was just not really do-able anymore. Somedays, I have to take a break in the middle of the day and go out to my car and lay down, and everyone at work is okay with that. I even maintained my full time status and benefits. I'm very blessed to have such a great place to work. But now, I feel four days is too much sometimes. I could never ask for more lead-way, as that would be taking advantage.

Again, thanks for the reply.

11-18-2007, 05:54 AM
Hi glassgirl;

We often post things "where ever" on the board - you're new, so this fits! Newly diagnosed often includes people who, like you, are in the midst of the process. Some people spend years trying to find a diagnosis.... the autoimune conditions are difficult to sort out, many times.

I'm glad you have an understanding employer - that can make all the difference. You might want to talk to your doctor and your human resources person about Family and Medical Leave (FMLA) - would a leave of a couple weeks - or several weeks working only 1-2 days, or 1/2 days help you? Under FMLA, your job is protected.

Also, visit a site called www.butyoudontlooksick.com and read "The Spoon Theory," the story may be by a young college student, but I think you'll recognize some of it. "I'm out of spoons" is all I have to say some days - and everyone knows I'm weary...

Many hugs, dear, you're in a good place here and we're all ready to ssupport and share.

11-19-2007, 09:06 AM
Hi Glassgirl :lol:
As Hatlady said, your story is very familiar to many of us. Everyone here understands what you are going through and can empathize with your symptoms. Also, I wholeheartedly agree with her suggestion about finding a doctor who cares about you and your symptoms and who will listen to you and take you seriously. That, in itself, is like having half of the battle won. Having an understanding employer is also a great benefit as well as an understanding and knowledgeable family.
Educate yourself about Lupus, its symptoms, medications, treatments etc. so that when you do your search for a compatible doctor, you can make informed decisions with him or her. In the meantime, you can come to us with your questions and we will do everything that we can to provide you with answers. Also, we are here to help you, to give you support and comfort.
Remember, you are not alone!

Peace and Blessings

11-19-2007, 09:05 PM
Thanks for your understanding and support. I do have a question to which I have not been able to find an answer: What is considered to be a "high" ANA count? I know it should be negative, but would 1:320 be considered high, or on the low end of positive?

Thanks again.

11-20-2007, 10:05 AM
The antinuclear antibody (ANA) test measures the amount and pattern of abnormal antibodies that work against your body's tissues (autoantibody). Everyone has a small amount of autoantibody, but about 5% of people have a larger amount. About half of these 5% have an autoimmune disease, such as systemic lupus erythematosus or rheumatoid arthritis. An ANA test alone cannot diagnose a specific disease. It is used in combination with an evaluation of symptoms and other tests to diagnose Lupus.
The results of an antinuclear antibody (ANA) test are expressed in titers. A titer is a measure of how much the blood sample had to be diluted before the presence of the antibodies were no longer be detected. A titer of 1 to 80 (1:80) means that antibodies could be last detected when 1 part of the blood sample was diluted by 80 parts of another liquid (usually a dilute salt solution). A larger second number indicates that the antibodies are present in greater concentration. Therefore, a titer of 1 to 320 (1:130) indicates a higher concentration of antibodies in the blood than a titer of 1 to 80 (1:80). Normal values of ANA titer are generally 1:20 or 1:40 and below. Your titer of 1:320 means that it took 320 dilutions before antibodies were no longer detected and that antibodies are present in a great concentration.
A high ANA titer may indicate systemic lupus erythematosus (SLE) if other labs and symptoms are present. SLE can be present with titers from 1 to 40 (1:40) and higher. Almost all people with SLE have a high ANA titer. However, there are a small number of people who have negative ANA lupus!
I hope that I've answered your question. Please let me know if you need anything further!

Peace and Blessings

11-21-2007, 05:33 AM
I hope this day finds you all feeling well. Thanks so much for the kindness and information. Finding this site has truly been a blessing.

Also, thanks for the encouragment....I fired my doctor.... I called yesterday to have labs scheduled or to make an appointment. I was told they could not fit ANYONE in until the middle of next week. I had them fax me release papers for our medical records instead. So, the search begins.

Take Care and Happy Holidays.

11-21-2007, 08:23 AM
Best of Luck in your search. Remember, don't settle. Try to find a doctor who fits you!!

Happy Thanksgiving!
Peace and Blessings