View Full Version : New to board looking for pre-diagnosis support

08-22-2005, 03:50 PM
Hello all,

My name is Raechel and i'm 26. Currently going thru the pre-diagnosis run around. I have a bit of a history but have not been diagnosed with anything. Looking to hear if anyone has any opinions or similar circumstances. When I was 12 years old I developed chronic ITP (low platelets) for several years. I was seen weekly at the local hospital because my platelets were dangerously low for some time. At the time my ANA was 1:80 and speckled but I had no physical symptoms other than bruising/ fatigue. I saw a rhuematologist who felt that I would develop Lupus by age 25. I went into remission at age 18 from the ITP and was in pretty decent health until age 23 when I developed horrible chronic athsma and a red rash accrossed my face (which my primary doctor thought was lupus) and she took my ANA. It came back 1:160 and homogenous and the anti-ds-dna was 17. At that time I went to see a rheumatologist but he did not feel I had enough symptoms to do further testing. My fatigue got worse and worse and I started developing leg and ankle swelling and severe joint pain last year, mild fevers with rash on face and another 2 on abdomen, pain on deep breathing (am now on Advair 500 for athsma symptoms. I get awful burning pain in my lungs. I also had a bout with tachycardia from age 16-18 to which they never found a cause for. My pulse used to run 130 while sitting and now it is in the 50's on every examination. I have always had protien in my urine in small amounts when they test it. So anyway Last month my rash was back with horrible low back pain in my hip/sacro joints with extreme stiffness in the morning.. it went on for almost a month. My primary doctor couldn't give me a reason so I went to the emergency room and they did an x-ray and found nothing. They also ran a CBC and found that for the first time in 8 years my platelets are low again. I went to the rheumatologist a week ago.. he didn't even want to hear me speak. I told him about my platelets and symptoms so he agreed to do testing. So far all that I have back is my sed rate which was 45 and my c-reactive protien which was normal. HE also ran another ANA, Anti-ds-dna, Anti-ro and Anti-la.. and I am awaiting those results at the current moment. I guess I am just nervous and discouraged because I have been having such a hard time breathing, walking, living especially during the last year.

Nice to meet you all... that is my current story.

08-23-2005, 07:49 AM
Hi Raechel;
Yes, you are indeed on that insidious merry-go-round that we call the Diagnosis Process. Some have had to endure a year or more of this process while others are lucky enough to get a diagnosis in a matter of months.
I am surprised that your rheumatologist is so unwilling to listen to you and/or to run all of the tests. Lupus is a very difficult disease to diagnose because it mimicks so many other diseases; but there are tests than can be done and criteria that can be looked at to determine if you fit the profile for lupus (or any of it's sister diseases - which are auto-immune and/or connective tissue diseases).
There are different opinions as to weather or not treatment should begin during the diagnostic process because each medication comes with its own set of side-effects and contra-indications.
You need to become aggressive with your treatment and your doctors. Learn as much as you can about Lupus, write down your questions and concerns based upon your body and the information that you have gathered. Take them to your doctor on your next visit and tell him/her that you demand that he take you seriously, listen to your concerns, start treating you or refer you to a rheumatologist who will!
It is up to you to ensure that you are being treated, therefore, you must become educated enough to talk to your doctor's informatively and demand effective treatment!
I wish you the best of luck. Keep us advised of how things are going for you!

Peace and Blessings

08-24-2005, 07:10 PM
Just wanting to wish you the best in your waiting game, as I think the "in between" is the worst part.

My thoughts are with you,