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

08-22-2005, 03:52 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.

Roni Shawn
08-22-2005, 04:00 PM
When you have an ANA of 1:40 and homogenous, what does that mean? Mine was highest at 160. But from what the docs tell ME, it needs to be in the thousands before you have Lupus. I feel that if it is close to, borderline, or just asmige over, then you got it...Thats just me...

08-23-2005, 07:39 AM
Raechel, first of all, let me welcome you to this wonderful forum. You will find a lot of support and good information here. I am so sorry you are getting the run a round from your doctors. I think a lot of us here have experienced that. I have had similar situation where the doctor doesn't even want to hear what you had to say. A lot of people have had to switch doctors, including me. It seems that many of them don't want to believe that people are sick.

As far as your symptoms, you have a lot of them that are consistent with lupus. The whole ANA thing is so frustrating as well as being in limbo waiting for a diagnosis. My best advice is to keep searching for a doctor until yuou find one you are comfortable with.

On a side note, I have a sister in law who has ITP and is currently in remission. Hers was so bad that she finally had to have chemo for it which is what finally put her into remission.

Please let us know what your others labs turn out to be and what your doctor has to say about them. Take care.

08-23-2005, 08:17 PM
Doctor called....

He said:
Sed Rate is 50 elevated
C-reactive protien neg
ANA 1:80
Anti-ds-dna 11
Anti-ro negative
Anti-la negative
Platelets 90,000 ( a tad low)

He said that he doesn't feel I have a connective tissue diseas and have no reason to see him further.
I feel like crap.. been running alot of low grade fevers and having all over joint-pain all week long. Pretty depressed because I was sure that I was right with what was wrong with me.. now I just have a few odd blood results and noone thinks anything of them.

08-23-2005, 09:17 PM
The elevated sed rate is a sign of infection, and your ANA is high, as well. Is it possible to see another doctor? Preferably a rheumatologist (a lot of general practioners don't quite know what to look for when it comes to Lupus)?

08-24-2005, 04:32 AM
He said that the sed rate being high and the c reactive being low means that the high sed rate isn't from an infection but from true inflamation on the body because the c-reactive protien was normal and that is a short term test.

He was a rhuematologist.

08-24-2005, 06:44 AM
Wow, Raechel. I can't believe he doesn't want to see you again with the way your labs turned out. I've read about others who have gotten a diagnosis with similar results along with the symptoms that you have had. I think that you know your body better than anyone else and if you think there is something going on (it sounds like there is) keep searching until you find a rheumy that will work with you. I get so frustrated when I read about doctor's like yours. I don't know how he could discount your sed rate and ANA. I'm sorry your feeling so bad and I'm sure it doesn't help any that you didn't get support from your doctor. We are here for you through this. Take care.

08-24-2005, 11:45 AM
Thank you so much.. I really appreciate having someone to talk to. The reason why this doctor isn't diagnosing me is because he is looking at it from the perspective that I have no symptoms. In other words he is discounting the symptoms that I told him about and acting like the labs are just some strange few things that turned up abnormal.

I got really depressed yesterday. My aunt who has lupus is convinced that it is attacking my lungs. I was in alot of bone pain all over last night it kept waking me out of my sleep. If I did't have a child to take care of I would seriously consider suicide.

In my honest opinion I'm being treated like this because i'm on medicaid. My primary care doctor calls my problems "mystery pains" and they act like i'm a hypochondriac but the 2 times in my life that I wasn't on medicaid I was diagnosed and treated for ITP and Tachycardia.

It can't be all in my head if I have abnormal blood results.. an ANA that low is nothing by itself.. nor is the low positive ant-ds-dna but combined with the symptoms, malar rash, history, sed rate and low platelet count I feel that it is substantial. Unfortunately he was the only rheumatologist anywhere near where I live that takes medicaid patients and unless my husband goes back to the persian gulf with the Marine Corpse we can't afford health insurance... and that's not a sacrafice I am willing to make.

08-24-2005, 04:09 PM
All I can say is that this really stinks!! Our healthcare system is pretty messed up. I believe what you say about the medicaid issue. I work in a hospital setting and when I talk to others with medicaid, I hear similar stories. I really wish there was another doctor you could see. Do you know a good general practitioner? The doctor you talked about before didn't sound like a lot of help. It's very frustrating to hear your story. You have the right to be treated for your symptoms. I'll get off my soapbox now. Take care. We're here anytime you need support.

08-24-2005, 04:23 PM
YEs I am going to see if I can find a different GP.. most don't take new medicaid patients so it might be hard.