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Possible Lupus Patient - Please reply

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Posted 5/2/2007 5:25 PM (GMT 0)
I am 22 years old, female. I went to the dermatologist yesterday for him to look at some indentions (scar like) on my cheeks that just appeared a few years ago out of no where. The Dr. was curious and then started looking at my fingertips under a light... he said I had lots of broken blood vessels around my nail beds and he wanted me to go have a blood test done immediately that he suspects I have Lupus. I immediately went into freak-out mode because I don’t really know anything about Lupus. As I looked at the symptoms on the web I noticed that I do have many of them... about 4 years ago I began noticing that my hair was falling out, my vision became suddenly bad (no problems before), I was always tired and my shoulders always hurt. Past blood tests have shown low white blood counts but my doctors have never thought there was anything to it. I also have sensitivity to light (in my eyes) and they tend to water a lot. Also, a lot of times when I wake up my face is very swollen but that subsides after about 2 hours. I break out in hives a lot but no rashes anywhere and I experience dizzy spells frequently. I have been sick with a cold or tonsillitis about 5 or 6 times since last August (8 month span) and my cough just won’t really go away. I am getting the results of the blood test back tomorrow and I guess I am just curious if anyone diagnosed with Lupus shares any of my symptoms. Thanks and God bless!Rachel
Posted 5/2/2007 5:39 PM (GMT 0)
The issue most people have with getting a lupus diagnosis is the symptoms vary so widely from patient to patient. Not only do they vary, lupus mimics and mirrors many other diseases and disorders. Sometimes testing via the blood still cant confirm a diagnosis.

There is a good list of diagnosing criteria that is used along with blood results. I understand it is very scary to hear you may have lupus and be in limbo while waiting to know for sure.

At this point all you can really do is carefully log your symptoms, work closely with your dr's and get all the testing done. Let us know how it goes!
Posted 5/2/2007 6:18 PM (GMT 0)
Rachel, Glad you found our forum! Lots of us with lupus have symptoms similar to those you are describing. However, they can also all be attributed to other things. Try not to worry too much and let the drs do more tests and decide what's really up. The best thing you can do is make notes of all these symptoms for the drs, including when they occurred, and take pictures of any rashes etc in case they disappear at appointment time. Check the links in my signature for lists of symptoms and tests used in diagnosis. Hope to see you again soon,
Posted 5/2/2007 8:35 PM (GMT 0)
I can relate Rachel I was diagnosed with A mini stroke in June 2003, Then was told the cause could be Multiple Sclerosis or lupus, and even lymes. One dr seems to think I am possible MS and the other dr isn't sure, said it could be either or. Besides having lesions or spots on the brain I have a high ANA which they say is high risk for lupus, The dr isn't sure which it is because the symptoms for both diseases are similar. After the June 2003 Ministroke about amonth later I was told I have reoccuring TIAs (mini strokes) and I still was not feeling right I kept feeling like some one was flipping my brain on and off like a light switch this feeling would last like a few seconds, Like I was going to black out but never did. Well in 2005 I finally was diagnosed with seizure disorder. I knew it wasn't anxiety like the doctors had thought originally. Pays to be persistant sometimes. I still don't know the cause of my neuro conditions and symptoms. I have to go get an ANA test done soon, my hair has been faling out over time, the last year plus, just comes out one by one no clumps but now my hair is almost half the thickness it once was. It was very thick. I also have Raynaud's, and myclonic jerks at night only.
I had a diagnosis of hodgkin's disease (cancer) in 2003 and after two different treatments was in remisson from june 2006 up until the end of this March. I started on a chemotherapy treatment COPP/ABVD with Rituxan April 9th I just began the 2nd round Mon. Cancer was found in lymph nodes in the neck chest and a spot of cancer growth beginning in the left lung. Having cancer complicates things sometimes, but I know I have the neuro symptoms and they are not related to the chemo some people get the neuro symptoms from chemo, like neuropathy, and seizures. The chemo drugs I guess could make those conditions worse if you already had them prior to the chemo treatment.

I have been away far too long from you guys. I'm graduating May 18th Yaaa!!!! Finally. Took me ONLY 6 1/2 years. It was worth it. It was a struggle but well worth it.

Question: How do you put your diseases, conditions, and meds in your post so it shows up each time you post ?

Carol "SUMR"
Posted 5/2/2007 9:55 PM (GMT 0)
Hi Rachel, I can't add anything as everyone has been so thorough but I did want to welcome you to the forum.

Take Care
Posted 5/2/2007 9:56 PM (GMT 0)

Sumr said...

Question: How do you put your diseases, conditions, and meds in your post so it shows up each time you post ?

Carol "SUMR"

Hi Carol, If you click on "Control Panel" on the top left, it will take you to a page where you can modify your profile. There is a place for a signature and you can type in your information there. Once you save, your information will be tagged on all of your posts.

Take Care
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