View Full Version : Diagnosis in waiting :): and Im just a newbie at all of this

01-11-2013, 10:12 PM

Tonight is a laying in bed not sure how to keep going and dealing with all of this with or without a diagnosis type of night.

I am new here and I see so many of you who struggle every day but keep going :) and help all of us with info and support and so much more.

My story started 6 1/2 years ago after my last child was born. I have so many symptoms but hate to even mention them because the Dr.'s drilled it into my head for 6 years that I was making things up and that no one can have as many symptoms as I do and it is all in my head etc etc I am sure you get the point. Finally 2 months ago I asked my pcp to run additional testing she told me they usually do not test for Lupus or autoimmune diseases unless there are symptoms to go with it (I as calmly as possible told her to review my 6 years of complaints) she obliged me and finally did the testing.

2 weeks later I receive the call that I needed to see a rheumy due to my ana coming back positive at 1:320 with a homogenous pattern. She stated this does not mean that I have an autoimmune disease but that additional testing would need to be done.

I have now seen the specialist and he has a good bedside manner, I am not sure how I like him yet but he listened but stated if anything came back negative he would not treat me so I am a little nervous still.

I gave 11 + vials of blood and a cup of urine at the hospital and am now waiting the 1 to 2 weeks for the results but my next appt is not for 3 months.

I am currently on vicodin for pain and savella that is doing nothing for me (well i only take the vic at bedtime)

Well that is the not so long but more than short story with minimal info. I am so happy to meet everyone :)

01-12-2013, 11:22 AM
Let me first welcome you to WHL. So many of us have been where you are. Told we were crazy for so long that we start to believe it. You are not crazy. AI diseases can make us very ill, especially when we go long periods without being treated. I am going to cross my fingers that you get some answers from this doctor. Please keep us posted. If not we will be here to help you with the next step

01-12-2013, 01:13 PM
Thank you :) I am realizing more and more how my symptoms are leading somewhere, things I did not even know could be a symptom like a headache like nothing I have ever felt before like a pulse on the side of my head and if I move wow that does not feel good.

I have been taking my time reading through so many posts to try and see and understand learn. I am glad to know you guys will be here no matter what, thanks again and I look forward to talking again.

01-12-2013, 02:19 PM
Hi there mrossomx2! Welcome to WHL forums.

01-12-2013, 02:49 PM
I would like to say hi and welcome also :).

It makes me sad when Drs act like we like to come to them,give them our money and complain about how we feel our body is betraying us daily.If that were the case couldn't we all do that at a bar with a waitress?Instead of multiple trips,referrals and exposure to more germs because of being at labs or pharmacies?

ask if they have a cancellation list available to patients waiting and that might allow you to get in sooner if you are in a position to be able to go in on short notice.

I hope all goes well with the dr you were sent to and if you feel like you need to be seen or are having a worsening of your symptoms I would ask if yu can call and have them fax a lab order to your local lab or come in to the office if they draw there.It might give you more clues when you do go back in.Your PCP might also be a help there.Hope things continue to go well with the dr and make sure you keep track of your labs and tests as it is often easy for overworked or harried staff to overlook certain things.

Be your own advocate.That is the best advice I can give.Be well.

01-12-2013, 08:29 PM
Thank you all so much for your encouraging words. I am going to start a binder for all of my labs to keep track, if I can remember but I am pretty sure my loving hubby can help me with that he is good at remembering those things

01-13-2013, 07:17 PM
hi, and welcome.
it is good that your doctor took so many vials of blood.
it is hrd to understand, but there is no actual test for lupus......
so taking lots of vials means doing lots of tests at once.

lupus is diagnosed by ruling out other problems first....
lots of tests means ruling out lots of things straight away.

tis shows a good proactive doctor.
i wish you a speedy diagnosis, so correct medication can be started.

01-13-2013, 09:08 PM
thank you Steve.b I am beginning to see that there is no true definitive answer :( the more i hurt the more i cannot wait to figure out what is going on.