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How to get Dxs?

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Posted 2/15/2008 9:02 AM (GMT 0)
I've been reading the different posts here and wonder how you get diagnosed.  I understand you need at least 4 out of 11 symptoms, and blood tests results would help....but do the Doctors ask you the 11 symptoms and you answer yes or no...or do you tell him/her what you have...like make a list?  would they not think you just made the list...how do you prove that you get a rash if the rash is not present at that time?  or sore joints?  if not red and swollen?  Or mouth ulcer if you don't have one at that time?  Dry eyes, mouth..??  I'm confused...how do you get Dx? 

I find you have to wait forever to see a specialist and alot of times the symptoms you have are not showing??  you know what I mean...

thanks for any help

quack

Posted 2/15/2008 9:39 AM (GMT 0)
Hi Quack, The doctor really likes to SEE the problem himself. We suggest (see link in my signature "Lupus Resources" there is a list of helpful hints from members here) that you take pictures of your malar rash, rashes and mouth sores while you have them because invariably they are gone by the time you see th doctor. Your eye doctor can administer a "schirmer's test" by applying a special piece of paper to your eye which will gage the dryness at that moment. The results can be written down for your rheumy. The rheumy can also sometimes see sjogrens in your blood work. Your first rheumy appointment will likely take an hour or so. He/she will ask you a bazillion questions. But we also suggest making a detailed history and symptom list which should be an easy to read list (not a novel) and should be typewritten. See "Lupus Resources" link in my signature . . . there is a post about this in that topic. You won't generally get a dx on your first visit to a rheumy. He has a huge puzzle to put together will need lots of blood work and labs to help him make a decision. Most of us feel that it is more important for him to treat your symptoms than to give you a dx. Sometimes demanding a dx in your file can come back to bite you. It can make medical insurance difficult to obtain in the future. So we don't recommend pushing for a dx if your symptoms are being treated. I hope this helps. Blessings! Blessings!
Posted 2/15/2008 3:40 PM (GMT 0)
Quack, I second everything Rosie told you. Please do check out the helpful hints for new members - there are some really good things there about ways to make the most of your rheumy appointments. Taking pictures worked really well for me to show my rashes and any joint swelling. It's hard to get pictures of mouth sores if you have them but I was able to get pictures of ulcers I had on my tongue. Also when you see your rheumy don't try to make yourself look really good by wearing a lot of make-up - let your rheumy see your skin without anything on it and your hair too. Be clean and showered but don't put much of anything on your hair or face. I really hope your appointment goes well.
Posted 2/15/2008 6:53 PM (GMT 0)

thanks for the replies so quickly...that info will come in handy when I have my appt...I will look up those links as well.

thanks again

quack

Posted 2/16/2008 12:02 AM (GMT 0)
I have to agree with everything already said. I was one of the rare few who after years of being told I was nuts took pictures and a history and symptom list to my rheumy on the first visit and end up walking out with a dx and medication. The thing is I was so bad off anyone with a half of a brain cell could have looked at me and known I was very sick- that is except for all those doctors who had decided I was making my visable symptoms like severe inflammation and rashes appear with my mind, one even told me I was altering my blood work with my mind. So when I finally was seen by a lupus expert it was really obvious what was wrong. Especially given the pictures of my face with a nearly perfect (textbook) butterfly/malar rash and fingers so swollen at the joints my hands were claws and the joints red and very warm. If you look at my signature you will see the progression of dx after the initial SLE one.
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