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tired of it
New Member


Date Joined Oct 2014
Total Posts : 16
   Posted 10/22/2014 4:12 PM (GMT -6)   
skull skull smhair
I am a "undiagnosed, unmedicated and untreated" SLE sufferer.
I am a 46 y/o female caucasion.
Apparently, I have had for 20 years positive ANA's and on/off dsDNA.
I developed the muscle soreness, bone aches, chronic fatige, numness, sleep trouble, head aches,
leukopenia along with neutrophilic troubles, lymphatic problems, thyroid problems, urinary infections,
bloody nose, broken hair, severe allergic reactions to sunlight and household lighting, daily eye blurryness, brain fog, nose ulsers, severe FLAT, but, bright red "malar" rash, skin blisters, flaming sore joints, IBS, trouble breathing, athsma, pluresy, chronic severe stomach aches, nausea, vomiting, suspected strokes.... etc.
I have an appointment with a rheumatologist 0n the 27th of this month. I'm sooooooooooooooooo tired of dealing with this, GP says it's all in my head ( even with these provablle symptoms and blood tests) and my oncologist finally put these pieces together and said... "I strongly believe this is lupus" and set up an appointment with the rheumatologist. I hope I treat the new doc with the respect he deserves, as I am fed up, angry, sad, depressed, frustrated and ready to "kill myself!" I will NOT, of course, do that.... but, it is how I feel!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/22/2014 7:11 PM (GMT -6)   
(((((((Gentle hug))))))))

I hope you get some answers with this new doctor.

Don't get frustrated right away. He will want to run some of his own tests.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

maggy2win
New Member


Date Joined Oct 2014
Total Posts : 3
   Posted 10/23/2014 9:08 PM (GMT -6)   
Hang in there! I know it's hard.

tired of it
New Member


Date Joined Oct 2014
Total Posts : 16
   Posted 10/23/2014 9:28 PM (GMT -6)   
I am darlin... my apt. with the rheumatologist is on monday. I just hope I am not rude. I am typically very sweet, but, chronic illness and pain have made me *****y. I just have to "breathe" and let him do the hour long assessment. Blood tests and clinical symptoms make mine a "shoe-in" for SLE... all he has to do is write it down, medicate it and send me on my way. I don't like doctors, the drugs or being "invaded" .... or told I have other crap wrong too! (which I'm pretty sure he will)
Bonnie ( tired-of-it)
Bonnie

Brismom
New Member


Date Joined Oct 2014
Total Posts : 8
   Posted 10/24/2014 11:24 PM (GMT -6)   
Ok Bonnie~you are exactly where I was last month. I have been dealing with everything you mentioned for almost 10 years and everything kept getting worse and worse. My doc sent me to pain management, aka (get me out of her hair). plus she tried to send me to a shrink once. Well I couldn't take it any more and I made my mind up, I was going to get answers! I asked all my friends to pray for me, I made an appt, with my regular doc and sat her down and told her, I wasn't going to stop until I got a diagnosis! I poured my heart out to her and she listened! For the first time in years, I felt like she really listened! She ordered me a rheumatologist AND a neurologist and I saw them both right away. Between the two of them they drew at least 20 vials of blood! 2 days later my rheumy's nurse called me and said, "You have lupus, the doctor wants to start you on Plaquenil right away". I just about cried! Of sadness? NO, happiness!!!! This is a diagnosis that took almost 10 years of constant pain, sickness, fatigue, not being able to work, thinking I was nuts, and wanting to end it all! Make up your mind Bonnie, don't quit until you get a diagnosis! I am still doing testing to make sure I don't have MS too. I hope you get answers soon! Good luck and God bless!

tired of it
New Member


Date Joined Oct 2014
Total Posts : 16
   Posted 10/25/2014 9:55 AM (GMT -6)   
I have a rheumatologist appt. on Monday. Hopefully get a declaration. idea yeah

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 10/26/2014 9:11 AM (GMT -6)   
Even if you don't get a slam dunk diagnosis, don't be discouraged. It takes time as these things are not always easy to pinpoint. I'm still hovering between lupus/splondylitis/uctd. Many of us have a connective tissue disease that although the precise name of it remains elusive the fact remains that there is an autoimmune disease wreaking havoc and we are being monitored and treated.

The important thing is to have your doc acknowledge your symptoms and begin treatment that will slow disease progression/ control symptoms. Whether it is lupus, RA etc. Many of the treatments are quite similar.

Good luck!

tired of it
New Member


Date Joined Oct 2014
Total Posts : 16
   Posted 10/26/2014 9:18 AM (GMT -6)   
Agreed!
Bonnie
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