what the hell is really going on?!

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tired of it
New Member


Date Joined Oct 2014
Total Posts : 16
   Posted 10/28/2014 8:44 PM (GMT -6)   
Went to the rheumatologist. He says I do not have lupus or autoimmune anything, nor inflamation or infection. He blew off my blood tests that have been consistant for at least 12 years. Said the "malar" rash is sun sensitivity... "lupus rash is raised, bumpy, it peels and has pain".... I call BS on that claim!!!! I've had positive ANA's for 12 years, positive DS-DNA on/ off in those 12 years, positive anti-sm... high sed rates, I spike fevers EVERY night (no obvious external sickness or injury) and the migrains are horendous! He blew off most of my symptoms too! I call BS on him telling me that this is NOT auto immune- it most certainly IS!!!! I call BS on him telling me that I have no inflamation or infection! Consistant positives ARE POSITIVES!!! I have met and passed the criteria for lupus with my hemotologist, internal medicine doc and oncologist! BUT, he also stated that if I get a positive on my antiphospholipid- "regardless of how I feel about your symptoms, blood tests etc, YOU HAVE LUPUS... no questions asked" He asked me how many live births I've had, then, asked me if I have had any miscarriages. I have had 9 miscarriages... apparently that is an ungodly amount. He asked me if I was ever tested for lupus when those miscarriages were happening. No... no testing for anything. I guess lupus causes that to happen. so, antiphospholipids are a filthy rotten scoundrel.

Anyway, he is retesting all blood work AND looking for thyroid disease, auto immune diseases, proteins in the blood (C3, C4), vasculitis, rheumatiod factor, vascular thrombosis, nephritis, myeloma, hemolytic anemia, etc.

I also suffer from neutrophilic leukocytosis (which flies in the face of lupus- lupus causes blood counts to go down) - mine are "up there!" But, if he is looking for leukemia or lymphoma... those numbers will rise. I wonder what happens if someone has "cancer" AND lupus... do those blood counts cross each other out? which one makes the other a "liar"? UGH!!!!!

Tired-of-it
(Bonnie) confused

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/28/2014 9:21 PM (GMT -6)   
If he still proclaims no to lupus then run not walk out that door.

I just got "inflammatory polyarthritis" slapped on top of my lupus with my new rheumy. They love to pile those diseases on top of us. :-p
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! :))

tired of it
New Member


Date Joined Oct 2014
Total Posts : 16
   Posted 10/28/2014 9:34 PM (GMT -6)   
Joy,
Have you seen my facebook pictures?
Bonnie
Bonnie

tired of it
New Member


Date Joined Oct 2014
Total Posts : 16
   Posted 10/28/2014 9:43 PM (GMT -6)   
Joy,
I sent you an email.. with pictures.
Bonnie

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/28/2014 10:05 PM (GMT -6)   
Email's server is down right now. I'll check again tomorrow.
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! :))

tired of it
New Member


Date Joined Oct 2014
Total Posts : 16
   Posted 10/28/2014 10:09 PM (GMT -6)   
Ok,honey.... but if that isn't classic textbook "malar" rash.... then.... I am a monkeys auntie! Lol. Do you want look at it on facebook I can send you a link.
Bonnie

tired of it
New Member


Date Joined Oct 2014
Total Posts : 16
   Posted 10/28/2014 10:22 PM (GMT -6)   
https://www.facebook.com/bonnie.petruzates?sk=wall
Bonnie

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 10/29/2014 7:32 AM (GMT -6)   
Hi Bonnie, my white cell count has been high always and forever. Every blood test. This is what baffles my rheumy and has her on the fence about it being lupus or not. I'm talking every blood test since my teens and I'm approaching my forties.

If you find out anything I'd appreciate you letting me know :)

tired of it
New Member


Date Joined Oct 2014
Total Posts : 16
   Posted 10/29/2014 8:30 AM (GMT -6)   
Acquiesce-
Will do!
Bonnie

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/29/2014 4:57 PM (GMT -6)   
That does look like the textbook malar rash.
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! :))

LAWCHICK
Regular Member


Date Joined Jul 2010
Total Posts : 468
   Posted 11/21/2014 9:58 AM (GMT -6)   
Just checked out the photo and that looks like the rash that I have gotten on my face from time to time. You need to go for another opinion if your Dr doesnt change their tune. How did the C4/C3 come out? My C4 is low and a low C4 with a positive ANA is an indicator of Lupus.
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