My Story I hope someone has the time to read

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Diggitydave678
New Member


Date Joined Oct 2010
Total Posts : 1
   Posted 10/19/2010 8:50 PM (GMT -6)   
Since I was about 16, I knew something within me was not right. I went through a very traumatic childhood experience and was never the same. I started taking anti-depressants and getting therapy some time ago. I never could figure out why I was the way I was. I tried every medicine in the book. I couldn't out-think it. I couldn't ever get out of the torturous cycles that seem to go through my head 24/7 365. I've never been able to keep a relationship and have always had difficulty with friends. I almost feel like my thinking is just off. I am paranoid and nearly dillusional sometimes. Sometimes I swear I know what people are thinking and get angry or upset.

about 3 years ago I went to the doctor because I freaked out about a near perfect circular red patch on my chin that would get red, dry out and flake off. I was told it was some type of dermatitis and given clozitramole??? or lotri something. I don't know. Anyway, no matter how much I use, it always came back. Some time had passed and it seemed to become just a red scar. I can't get rid of it. It is light red, then dark depending on environmental conditions i suppose but not sure. I stopped worrying about it and a few years later I got another round circle red patch with nearly the same symptoms next to my nose. The general area near my nose and mouth has gradually gotten more red and certain areas around my mouth have also become flaky but not circular.

A few months ago due to the lack of any progress by my anti-depressants I was prescribed adderrall. It worked wonders (while it was active) except the side effects. The chest tightness. I stopped taking it but the chest tightness didn't stop. I was forced to see my GP and take a breathing test. My lung "performance" seemed well (good) off the charts so I was temporarily relieved and thought it was anxiety. However, today I realized that the tightness is just about all day. Then something hit me, when I was with the doctor and he looked at my face, he would not diagnose until I saw the dermatologist (which first appt is a month away) but the only thing i could squeeze out of him was ..." well people with lupus have this butterfly thing" Not sure why he said that as what i have at this time seems to be more round shape redness/flaky/rash

I called another doctor and asked if I could be tested for lupus. The lady on the phone was one of the rudest people I ever talked to. Whatever I said she said "ooooooooooooooookkk????" as if i was crazy. She said the doctor would call me back, guess what he didn't.

I read about Lupus extenstively and honestly... after years of suffering wit mental issues and now the skin/chest tightness issues. It would almost be a relief for them to find something so I could at least start getting treated with the right medication. The depression i've suffered has been brutal and I wouldn't wish it on my worst enemy.

My sister suffers from MS so i'm aware of these types of illnesses but i'm not going to jump just yet.

Thank you for reading.

southerndiva
Regular Member


Date Joined Apr 2009
Total Posts : 122
   Posted 10/20/2010 9:41 AM (GMT -6)   
Dear DiggityDave,
I'm sorry that you have had such horrible experiences with the doctors you have been seeing. 
Do you have a primary care physician or when you asked to get the lupus test was it with a doctor that you haven't seen or developed a patient relationship with?  Many times we have to be our own patient advocate and keep pushing to get answers.  Lupus or any of the autoimmune diseases are different for everyone, that is why it is so hard to diagnose and sometimes takes years for a diagnosis.  So the doctor didn't call you back, then you call them back.  You really need to see a rhuematologist but you often have to get a referral from your pcp to get into one.  I see you do have an appointment with a dermatologist so at least that's a start.  Try and be patient through the diagnosis process.  The stress you bring on yourself makes any illness worse.  One day at a time.
Hugs and Angels,
Lynnette
 
DX - sle and carpal tunnel syndrome
RX - plaquenil, prednisone, etolodac, lisiniprol, folic acid, darvocet and flexeril when needed, vitamins and hormones

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 10/21/2010 5:01 AM (GMT -6)   
Hi DiggityDave. I guess the most important thing to say is that there is not one blood test for systemic lupus. To diagnose lupus you must meet 4 of 11 set criteria. Please click on Lupus Resources at the top of our forum and go to AlwaysRosie's post for the link to lupus.org.
 
Besides systemic lupus, which can effect the entire body, there is also discoid lupus that effects the skin, and drug induced lupus.
 
No doubt the receptionist at your new doctor was skeptical because so many folks think they have lupus, but don't meet the criteria.
 
I have major depressive disorder and take 5 psych drugs, but I've only had it for about 7 years. Sadly, it took 2 years for me to get diagnosed with lupus because I was in a new town and didn't have a doc who knew me well. So docs thought that since I was depressed the symptoms were psychosomatic. I had to go doctor hopping.  Finally one of my tests was positive and I was referred to a rheumatologist. It was another year before I met 4 lupus criteria and was diagnosed.
Yes, it was a great relief to know what was causing all my problems.
 
I guess the most important thing is to try your very hardest not to stay calm and take Lynnette's advice and stay with a doc you have a relationship with. Love, Butterflake
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