Hi, new member in Illinois (44y/o). I have had Lupus for years!! I haven't been treated for at least 3 years (I felt pretty good) but I've been noticing a change. Actually, the past year has been pretty rough from physical pain to depression, anxiety and cognitive issues. I have an appointment 2/19. I recently had an appt with a Dr and asked him to do some general Lupus blood work since my rheumatologist appt isn't until February. I wasn't told the numbers, but was told the ANA was high (it's been high before) and PTTLNA was high. I don't know what PTTLNA is, what it measures or the significance of it being high is. Can someone with insight help me to understand? My rheumy has never been good at explaining.
Diagnosed with SLE by blood work & biopsies
Anxiety & anxiety attacks
Spastic colon - IBS-C
Rectal prolapse (not "prolapsed" as of yet)
Carpal tunnel surgery
Currently I experience pain & symptoms daily. The pain can be debilitating but the most concerning for me are the "fogs" and the cognitive issues. Those scare me. Advice, guidance and/or suggestions would be greatly appreciated.
Sorry I can't help- I have never heard of pttlna.
But I did want to welcome you.
I live in Frankfort (south-west suburb of Chicago)
Thank you, Niall. I'm just outside of St. Louis - not all that far from you. I once lived in Wheaton and then moved to Plainfield (near Naperville). Those highways are just a little too busy & congested for me. lol
I may have misunderstood the nurse, maybe she said PTTL & A??? I don't know what it is either. I want to learn the tests, what the results mean and such and I thought what better way than to communicate with others who suffer from the same...
Absolutely I have learned a great deal from other lupies experiences!
Although it has been very quiet here lately.
I grew up in Elmhurst (very close to Wheaton) and lived in Bolingbrook which is near Plainfield.
Hi! I haven't been on this site since this summer. Looks like you both were near neighbors to me before you moved (I live in Glen Ellyn). I too have had Lupus for many years.....say 48 years...and I'm "still kicking" with the grace of God! I have been doing great but just recently I got a test result that has confused me and I don't know if I should be worried. Have either of you gotten a high ANA (116) but a negative sdANA? My doctor never called me after the tests but I haven't had a high ANA for years and I'm concerned.!!! (ps I have never heard of a PTTL in all my 48years. You need to find out what it stands for!)
ANA is indicative of an auto-immune disorder.
Anti- dsDna is very specific to lupus but not everyone with lupus has an elevated level.
I lived in Glen Ellyn 34 yrs ago- I passed through on my way to Addison on Christmas Eve.
thank-you once again for the clarification. I was concerned over the holiday because my ANA was 116!!! yet my dsDNA was negative. After inquiring at my doctor's office....I finally got a call from my doctor. Seems there WAS AN ERROR in the test results on the ANA....they are "revamping the system" and trying to fix the errors! So, I'm ok....he retook the test and now it turned out negative :). I have learned something new through this experience...never knew about the dsDNA..thought it was the same as ANA.