View Full Version : a liitle scared

03-30-2009, 04:01 PM
So 2 weeks ago I went to my doctor because i was not feeling good and so he did some blood work. I got a call today from my doc who has a very heavy accent and is hard to understand but, anyway he said my blood results cane back and something didn't come back good then he asks if I had told him that my mom has lupus I said no because she does not. Then he says he want me to see a specialist a rheumotologist and that he is gonna set up the appointment. I should get a call this week with the appointment for the specialist.
But, now I am going crazy what exactly was wrong with the blood test and why did he mention if my mom has lupus . Is this what he thinks I have? This doctor is not very clear and does not explain things. I am going to be looking for a new doctor!!!!!!
Any input would be great!!!!!

03-30-2009, 04:29 PM
hi oliveira10193

welcome to the group. oh wow, i guess you are scared. i am glad you will be looking for a new dr. however, i am glad he is getting you into a rheumy....maybe he can make it happen quicker than if you called yourself. sometimes the wait is several months.

there are certainly cases of mothers and either their daughters or sons with lupus, there are also sisters with the same diagnosis. i don't know that this means it is genetic, but i do know that your diagnosis is dependent upon whether or not your mother is positive.

there are several auto immune diseases, and specifc tests have to be run and certain criteria have to be met for any diagnosis. so, try to relax, wait and see what you find out at the rheumy.

i would advise you to start a diary where each day you write down any strange things going on with you. for example, are you noticing any raw spots, or sores in your mouth or nose, where is any pain, are you fatigued, have you noticed that being in the sun makes you feel worse, etc.

keep a close watch on yourself and make a list of symptoms. Symptoms will come and go, so list any that you notice even if they don't stay the same.

take this list with you to your dr. and read around in this forum....the more you know when you see your dr., the better.

welcome, glad you are here, hope we can help you with your questions.

Angel Oliver
03-30-2009, 04:38 PM
Hello and welcome. I agree with Mountain dreamer, make a list of your symptoms and get a new Doctor, but not just yet.
First of all, tomorrow call your Doctors secretary as a matter of urgency. Do this and tell her you are now VERY anxious as you could not understand what was said to you.She will then get your records and tell you slowly to make you understand. She may not be able to give you a definate answer, but she'll put your mind at rest. I was told i had Lupus BEFORE all the blood results came through. When they eventually did come through, I did NOT have Lupus after all. So dont think the worst just yet, even though i know you will do.
When you have spoken to her, see if she can rush through your Rheumi appointment.If not, if you know the number you call. Doctors will make you wait, so its always best to chase them all the time!
Doctors can say things without a thought for how the patient interprets it. At this moment you DONT know what is wrong with you.So take one day at a time and calm down as much as you can.Come here and we will try and support you until you know.
Hope i have helped a little.
love n hugs

03-30-2009, 04:50 PM
Phyllis and Angel both had very good advice for you. The only thing I'd add is to request a copy of your labs be faxed/emailed/snail mailed to you so you can become familiar with the tests that were done and prepare a list of questions for your rheumy appt. Try not to panic (I know-easier said than done) and know that whatever the diagnosis, it's not a death sentence. There are many meds available to lessen your symptoms-whatever autoimmune disease is going on.

Best of luck to you.

03-30-2009, 06:09 PM
I also agree with them about making a list of your symptoms and bringing that list with you to your rhumy. I'm so sorry about your doc not explaining things. I know how you feel about that cause I had a doc that wouldn't explain things and I stopped seeing that doc. I hope you are able to figure out what is wrong and that you start to feel better.

sick n tired
03-31-2009, 02:31 PM
Hey Oliviera,

I can understand being scared...there is a chance that your doc did an Ana, Antinuclear Antibody Test , on you....and it was positive.....I had them fax my bloodwork to my hubby's work and he emailed them to me, so I was sitting there and had to google to see what those tests meant.

It is one of the initial markers of lupus..understand it doesn't diagnose you and being positive just says that you might have something autoimmune.

What are your symptoms? I mean what sent you to the doc in the first place? for me it was bone wrenching fatigue, hair falling out, dry skin. I thought it was thyroid...was wrong..
Not sure what is wrong with your doctor not explaining...can you get in touch with his nurse and ask or at least get a copy of your bloodwork...


03-31-2009, 03:19 PM
Everyone has given you excellent advice. I would like to add a tidbit

You are always entitled to a copy of your lab results. They are yours. When they call, after the conversation, ask that a copy be mailed from any tests that you have.

And even if they haven't called, which usually happens when your tests are supposedly in range....call after a week from testing and ask for a copy for such and such date...again these are yours.

All copies will come in handy afterwards, at some point during your diagnosis, going from doctor to doctor.

Keep looking for your wellness..

04-01-2009, 01:40 PM
Thank you for your advice!!!
The doctor's secretary called me today with an appointment with the rheomotologist for april 20th. So we will see how it goes.
Someone had asked what my symptoms are well, every so often Iget pain in my knee that shoots up and down my leg, pain in my neck, sometimes my wrist and also I usually feel like in a fog or just out of it at times.

Thank You,

04-02-2009, 05:06 AM
hi there.
its completely normal to be scared...but i wouldnt worry too much until you actually get the diagnosis. they asked you if your mom has lupus , because lupus is heriditary. [spelling? haha]
but that doesnt mean anything, because I have lupus, and absolutely NOBODY else in my family has it.
im just the oddball of the group lol.

everybody on here pretty much covered everything that i would have said myself.
i wish you the best of luck on the 20th, and i'll keep you in my prayers :]