Hi there! I wish I could check this forum everyday but between my kids, husband and work - I am unable too and it seems I miss alot! Glad the drama is over and all worked out. Welcome new people! I usually don't have lots of knowledge to share, but can give tips. But now I have a question.
I had to switch rheum. Because of insurance. My new one examined me and said "you may not have lupus, but then again you may". I hate that. I do not have all the terrible symp. That many of you have, but before I started on the plauquil and dirutetic I did. Terrible pain, skin rash, mouth sores, I have rynands symp daily, and my ana was positive. I used to say my pain between 1 10 was 9 - 10. Now its about a 2. So anyway, this doc takes a new blood test (very expensive!!!) and said my ana was positive but in the border line (80?) so he said to keep doing what I was doing. So if I don't have lupus what else could it be? He said "you may just be achy". Well that got me mad because I have a very high pain tolerance and every part of me was in such pain I could'nt get out of bed one morning! I let it go for months. I remember once not being able to even buckle my seat belt because my hands hurt so much. So now im not sure. He wants to see me in 3 months.
1) you may be doing better. If your ana titer was 1:80...It is borderline and depending on the doctor they may or may not say it is positive.
2) he's new and he wants to make sure you are getting the correct treatment. I have had this happen almost *every* time I have gone to the er.
3) there are also other autoimmunes that have likeness to lupus. He probably wants to make sure. My best friend and I (she is a doctor, by the way) joke about how every time you see a new rheumatologist, they have to run all the tests again. It just goes with the territory.
4) if you really feel that uncomfortable, see if you have other options with the insurance.
I know this is not overly helpful, but may point you in the right direction.
For two years I went through every test known to man...
No one could pinpoint what it was. I was finally told it was
in my head. I had to get a second opinion... I felt like someone
was telling me I was crazy. The next doctor slapped the label
cfs because I didn't have a rash.... In the beginning I did
not pull a positive ana... I was fatigued, had severe joint pain,
ulcers in my mouth, uv sensitivity.
A few months later.... My doctor got a new "partner" a younger
doctor who got "stuck" with me. Thank god she did... She
saw a pattern and started monitoring things very carefully.
She finally found my demon with a urine protein test. 6months
later the anas started coming back positive....
The moral to this story.... Lupus is hard to diagnose. If a doctor
double checks a previous diagnosis its not a bad thing. There are
so many indicators for lupus that could be another auto-immune
disorder. There are also so many things that can be mistaken for
Definitely obtain your medical records. Review them with the new
doctor. Ask questions.... Don't let it shake you... Again remember
the more you know and understand the more active you can become
in your own recovery and wellness. Remember this is his/her job
but your life!!!!
Thank you for your replys. I did in fact, have my old records. I just go the feeling the doctor did'nt care for my first one - you know one of those "power" things. I think I am border line and don't have it as bad as most thank goodness, but will continue with what I am doing since it is helping and just go for my 3 month px's - but he did'nt come out and say I did'nt have lupus - just said I had indications that could be. So I guess in lay mans terms - it means he does'nt know for sure and will stick with the original diagnosis. Good grief. I get more info from this forum and will continue to use it as my guide!