Lupus

Hi,

I have had positive ANA test.  I have Hashimotos Thyroid disease.  I have tested positive for RA.  What does all this mean?  I thought if you tested positive for ANA you had Lupus, doctor said no.  Should I be concerned?  My Aunt on my mother's side died of Lupus, the weird thing is she tested negative all the time, she ended up going to SF where they did a punch biopsy to confirm Lupus.  My twin sister has been diagnosed with Lupus as well, she is on plaquinil.  I am concerned for all these reasons.  The doctor did an anti - smooth test can't remember the name but she said they came back negative.  When in the last couple of years I have had weird symptoms.  Early menopause I am only 43 started at 39 thought I was going crazy, I still have short term memory loss, it's scary.  

[luppygirl]

Some people with Lupus still get a negative on there ana tests. Not really sure why.  but if you have be dx's with RA they give you Plaquinel for that also.  so it sure wouldn't hurt to take just in case you do have Lupus.  Lupus is hard to diagnose.  They don't call it the disease with a 1000 faces for nothing.  Are you getting tested by a Rheumetologist if now i would recommend getting regerred to one.  They are trained in all these matters and you should get and keep copies of all you test results be persistant. This is your health we are talking about nothing to fool around with.  Write a list of questions before you next appointment and make sure he goes over them all. Keep in mind you are paying him for his time.  Don't let him rush you, you are his boss at that moment and don't let him rush you just so he can get onto his next patient and he can make more money on his next patient.  You paid for you time you deserve his undivied attention. I know nobody want to rock th boat just in case he decides not help you any longer. That his wrong and you can report him for stuff like that. Just because you are sick doesn't mean you don't have rights..Try to relax in the mean time and good luck and keep us up to date as to what is going on.

Deborah

[zmombomb]

Definitely see a rheumy and make sure the doc is well aware of the punch biopsy method and the family genetic links.  The docs now seem to be leary of putting an actual diagnosis on paper or to say it.  They just keep treating the symptoms as if you have a disease, but won't name it.  Maybe it's best that way, in case you want disability insurance later.  Once all this is in your records, you'll never get life insurance, disability insurance or long term care insurance.  You are a risk for having them have to pay out on it.  They only want you if you show no signs of ill health.  imagine that.    I had a positive ANA back in 2002 at a 1:320 result, speckled.  Right now, I'm at 1:40 and considered NEGATIVE.  That happens.  Everyday, your ANA will be different.  When my doc does the ANA again, I'm spending the prior day in the sun, as I'm told that will jack that number high enough to get a definite diagnosis.  I've already been denied every insurance known to man and animal.  MAy as well get a true diagnosis from the doc, right?  Do you get super sleepy/dopey the day after being in the sun???  

[luppygirl]

Just be careful with the sun. It might not show any outwards signs of damage but it can cause damage to organs and such.  I am all for doing what you have to do to get dx's just be careful.

[Virgie8865]

Thanks for the posting.  I have had pericarditis, sometimes at night for no reason I have my esophagus close on me and I can't breath for seconds but seems like minutes, really scary always at night though if I am on my back or on my front no difference, I weigh 148 at the time this happened happened 4  times so far started in 1996 and had one last year, nothing found no cold nothing?? Beside thyroid disease and already postmenopausal at 43 years old had not really been sick.  But now I have short term memory loss, back pain, enlarged uterus did a biopsy for this as I had postmenopausal bleeding.  In the last year just felt run down, I take lots of vitamins especially B12.  I had rash on my face which they said was roseacha,  I feel inflammed all the time and my joints hurt, I truly feel like an old lady, but I try to walk everyday.  

[klincos]

>>>Do you get super sleepy/dopey the day after being in the sun?

Hi,

Just curious why you ask about the sun? I have issues with this too--i.e. I'm sensitive to heat/sun--it saps my energy. But then I'm cold sensitive too--it makes my nerves "tingle" like crazy!! I also get weird sensations on my legs too when I'm indoor at times: I feel strange (almost like I'm antsy, or anxious, it's kinda hard to describe) when I'm wearing a pair of jeans / or any other kind of material / clothing on my legs! I have to wear shorts--I just can't stand the feel of any material on my the skin on my legs or something??? Even when I lived in the cold weather of Colorado, I would where long pants into my office then I would have to change into shorts to get thru the day. Luckily I worked from home a lot of the time so I didn't have to do this very often. LOL

Anyway, I have MS -- DX 3/2000. My question... (Sorry!) ... Is this heat/sun thing also an issue with Lupus? I have a couple of posts about a recent positive ANA (speckled 1:640) which I am trying to investigate. No other outward signs or supporting blood panels for other aliments suggesting Lupus, etc. but I do have an appt. with a specialist soon. Today I am hoping to see if old blood work prior to MS DX will show what ANA was "way back when"---I wasn't aware it could change day to day as I'm seeing here.

Thanks (Sorry for the rambling!) :) :)

Kerry

[klincos]

Just to follow-up on my ANA test...

I spoke to my neuro's office yesterday after they reviewed the results of my blood test. As a refresher, the test was ordered by my GP, not my neuro. GP recommended that I see a rheumatologist, etc...

Neuro was as confused, as I was, in regards to [all the concern] and assured me that this type of result (see post above) is VERY OFTEN seen in patients like me, with MS (just as I suspected) ...