I am confused

[griddle]

I go to my rheumy next week.(have not been officially diagnosed) She requested that I get any blood work results that has been done in the last 6 mos from my doctor. I got it & was looking at it. Everything looks absolutely normal but I feel horrible. Also my ANA results did not look anything like what I have seen on here. The results have low, normal & high collums with a flag reference collum. My numbers were in the normal collum & it said 0.6 then in the flag ref. it gave numbers of 0.0-0.1. It does not show any titers or anything that looks like scores that you guys have talked about. does anyone have any helpful comments? Just thought I would ask here before I went to the rheumy. How many of you have had normal tests but had all the symptoms. I am to the point now that I do not know what I wll do if they don't diagnose me with something. I feel crazy! Thanks, griddle:worried:

[wifajax]

Hi griddle!

Lab results can be so confusing! I understand what you mean about feeling sick, but having normal labs. I have had a positive ANA and a positive anti-smooth muscle antibody, but everything else is well within normal range. It is sad to actually HOPE something shows up wrong, just to feel like it's real.

There are two ways ANA tests are done. One is called immunofluorescent assay (IFA) and the other is ELISA (can't remember what it stands for). IFA is the most frequently used method, and that is the one that gives titers, like 1:320 or 1:640. ELISA is a newer way to do the test, and it uses reference ranges rather than titers. There is no way to "convert" your test result to a titer because the tests are done so differently. You can only go by the ranges given on your result sheet. If you aren't sure what your results actually mean, ask the rheumy for an explanation when you see her next week.

My anti-SMA was done using an ELISA method, so my results are also nothing like what I've seen on the Internet. It's very frustrating when you can't get much of information about your personal numbers, isn't it?

I hope the rheumy will be helpful to you, and give you some answers.

Terri

[Lily]

Hi Griddle :)

I hope your appointment goes well with the Rheumy. Make sure you have a look at the criteria used to help diagnose lupus and also jot down a list of ALL the problems that you have been experiencing with your health, past and present. Try and make the list brief but list the symptom, the Rheumy should question you further on each one depending on what significance she thinks it holds in investigating this. When you go dont wear make-up or nail polish, they can often tell a lot about whats going on inside by our skin and nails. And yes do get copies of all your bloodwork and any relevant details such as the Dermy appt etc. to take along also.
Is there anyone in your family with arthritis, or an autoimmune condition.........thats worth mentioning also.

The Rheumy should do a whole lot more testing than your GP has ever done and that will give her clues as to what might be going on. A urinalysis would be handy too, I would hope that she would do one, unless its been done recently.

Your ANA result being negative is not the end of it, many of us had that scenario early on, as long as your problems point towards some sort of connective tissue disease the rheumy wont completely disregard the possibility of it. The way your ANA is written is done by a newer sort of method by the look of it, we have had a few in recently with that sort of reporting on it, some labs are doing that now, not showing results in titres, so dont worry about that too much.

Good luck and try and not stress too much about this. I know its easier said than done, but a good preperation on your part, taking all relevant info and even taking someone along with you can be helpful. They can then fill in any gaps you may forget, or at least be another set of ears for you.

Dont expect too much first visit, she will probably run a lot of bloods, do a thorough physical and have you back for a follow-up. Thats normally how that first visit goes.

:hugbetter:

love
Lily

[griddle]

Thanks for getting back to me. I know that this could be a long process, it has already been about 4 1/2 years long. I have written down all of my symptoms & I have started on a diary. As to having any one in my family with an autoimmune problem? I have one cousin with severe arthritis. I was just a little put out that I could not make heads or tails of the whole thing, especially after I had been reading up on how to understand it all.
I am just really nervous that the rheumy is going to be really weird or not care. One thing that makes me feel better is that she is part of a diagnostic clinic so I know they have got to be aquainted with people like me!(I'm not for sure what you would call me)
You guys have been really sweet & helpful. I will let you know how it goes. Thanks, Gina