View Full Version : What do YOU think?

Adventure Racer
07-23-2009, 04:30 PM
I am brand new to this forum, and would love your thoughts on "my story". :unsure:
I also have a few questions I am hoping you guys can help answer for me!

I've been quite sick for some time, with multiple issues.
This latest bout, my doctor checked my ANA and it came back postive with 1:640 Homogenous and 1:640 Speckled.
I have read about false positives and was wondering if a titer at this level could fall into a false positive range. I know this is considered positive result, but is 640 considered mild, moderate, or really high?

My doctor ran another large set of blood tests after the ANA came back high. I got a recorded message from his office today stating that all my additional bloodwork came back normal. I am not sure what all those tests were, but do think it included C3, C4, dsDNA.

Should it mean anything that my ANA was 1:640 and all the other bloodwork came back normal? I have heard healthy individuals have some ANA, but is this titer level possible with "healthy individuals"?

Here is a list of the symptoms I have had over the past few months:
1. malar rash / rosacea? Went to a dermatologist last year to 'clear up my red skin prior to my wedding. He immediately told me it looked like a Malar rash rather than rosacea and encouraged me to get my ANA tested.
2. one Kidney that abruptly became necrotic and had to be removed 3 years ago. Cause was never diagnosed.
3. Severe headaches. Neuro said migraines, but just doesn't seem to fit to me.
4. unexplained fevers of 104 degrees two to three times a year
5. ANA of 1:640 Homogenous and 1:640 Speckled.
6. ankles and wrists get very stiff and sore
7. pain in joints of toes and fingers
8. in the cold, extremely painful fingers that turn white and blue
9. extreme fatigue. i need a nap every few hours.
10. sun allergy that causes extreme swelling in my face and purplish skin

I have a cousin that died from Lupus at the age of 40. Another cousin that has been diagnosed with MCTD. I am the only other female cousin in this generation. Are these diseases known to be hereditary?

Thanks for any help you can provide!
A little worried, but trying not to overreact!:wacko:

07-23-2009, 08:45 PM
welcome to WHL! I am sorry to hear that you have been having such a hard time. You have found a place where you will meet a lot of people who can identify with the feelings/symptoms you have been experiencing and I am sure that it won't be too long before they start swinging by.
Personally, I can identify with 1,3,6,7,8. Sometimes 9 and 10 (swelling not purple). From all that I am learning, it sounds like an autoimmune issue or two to me.
The fingers issue sounds like Reynaud's Syndrome, which I also suffer from.
Have you been to a rheumatologist yet? If so, what did they say?
I can't answer your lab questions, but if you search around this site for threads regarding lab work/results I think you will find a lot of good information. If you click on a person's page, you can personal message them and see there pictures. I have an album that shows a lot of my flarey symtoms.
There is also an arcade section where you can play games on here too.

07-26-2009, 09:13 PM
hi adventure racer,

first, i want to welcome you to our group...this is such a wonderful place to find friends who truly understand what you are going through, and who will always help whenever we can.

your symptoms certainly are the same as many of us here. Lupus is a very individual disease, and can affect people very differently. However, your symptoms are very common to most of us.

when do you go back to your dr? did he start you on any medications? there are different treatment options, and the med plaquenil really provides some people with noticeable improvements.

Yes, it is possible for your ANA to be elevated and other lab tests to come back normal. We have some incredibly knowledgeable members about blood work....i am sure they will be along soon to help you with these questions. I do not know if 1:640 falls within mild, moderate or high, but i do know that mine is 1:1280 and is considered high.

i have never heard lupus being defined as heredity, but there are many cases where it runs in families.

i hope you will stick around, and participate in our little world-wide family.

07-28-2009, 05:21 PM
I just wanted to say hello. Sorry for your suffering. I agree with Phyllis and Sandy...you should probably make an appointment to see a rheumatologist. Take copies of your bloodwork and a record of your symptoms, etc. Keep us posted on your progress.

This is a wonderful forum. Take advantage of all it has to offer.


Adventure Racer
07-29-2009, 06:06 PM
Thanks to everyone for your encouragement and support!
I am searching out a good Rheumy and will keep you all posted on my results!
I have been on prednisone for the past few weeks and am really feeling much better. Hopefully this lasts as I taper off the pred!

Angel Oliver
07-29-2009, 06:08 PM
Just to say im thinking of you and hope the meds keep helping and you find a good rheumi soon too to help you more.

love Amanda.xxxxxx