Im lost and confused.

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Confused Kelly
New Member

Date Joined Jan 2015
Total Posts : 2
   Posted 1/23/2015 9:18 AM (GMT -6)   
I am a 33 yo female. Since I had my sweet baby boy 2 1/2 years ago my body has changed so much. I have been so tired and worn out, staying sick all of the time and so cold. For the past year I have struggled to get out of bed everyday. I am so tired everyday as soon as it sit down on the couch at night I'm out like a light that is if my legs let me. Spring last year my hips starting huring so bad I cant stand it. I was also suffering with headaches. I went to MD and they did lab which showed a neg ANA but elevated sed rate. I was put on celebrex and sed rate did come down. I went back because of continued headaches and hip pain. I had a head ct that showed nothing. Nothing new for my hips. I went back again and more anti inflammatories for my hips. Went back again and they said it was my back so sent to ortho. Had MRI which showed a bulging disc pushing on nerves but accorinding to the Radiologist this was not bad enough to be causing such pain. Since then I have had ulcers popping up in my mouth. I have an ulcer in my nose that will not go away.  2 months ago I started getting a rash on my hand that is so much like a discoid its crazy. I have gotten more on my arms and neck. MY face is also turning red and burning and then the skin peels off. My eye lids are swollen and red. Since then 3 weeks ago i was diagnosed with pleurisy. Scheduled derm appt in hopes for biopsy as my friend with lupus swears that the places I have are discoid. Went to derm yesterday and was dx with dermatitis and refused biopsy. I left the clinic in tears. My body feels like it is falling apart. Im lost and confused and don't know where to go from here. I feel like I'm going crazy. The nurse at derm yesterday even told me not to give up that she would talk to another MD at the clinic an see if they would do the biopsy. SO after that long spill what do you guys that have been diagnosed with lupus think of my case? What do you recommend. I open to anything at this point. I just want some relief and be able to enjoy my life and family again.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 1/23/2015 2:01 PM (GMT -6)   
Sounds like something's going on. Your rheumatologist sound like they are not following the 11 indicators of Lupus. You need to have at least four of the indicators to be diagnosed. Positive ANA is one of the eleven.

if I was you I would get a second opinion.
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! :))

Confused Kelly
New Member

Date Joined Jan 2015
Total Posts : 2
   Posted 1/23/2015 2:40 PM (GMT -6)   
Thanks south for your reply. One of the problems is where I live within a couple hours there is only 1 rheumatology office. They will not even see a patient until there is positive lab or biopsy results. So I can't get in to see them without positive Ana or biopsy. Ugh

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 1/23/2015 5:07 PM (GMT -6)   
First off, I am so sorry you have to go through all of this. There are many people on this site that will tell you (myself included) that getting the proper diagnosis can be very difficult. Trust yourself! I think I saw 5 different doctors before I finally received a diagnosis. My biggest supporter (other than my husband) was my primary care physician. She knew something was wrong but also insisted I had to have a rheumatologist to treat it. Unfortunately, there are quite a few rheumatologists practicing that ignore the whole "4 out of 11" and will not diagnose. My ANA was 1280 but I actually had 1 rheumatologist tell me that "since I could bend over and touch my toes, it could not be lupus". Left that place as quickly as I could!
So, don't give up. You know yourself better than anyone else. It may or may not be lupus, but something is going on. So maybe you could talk to your primary and explain how frustrated you are. Diagnosis or not, you need somebody to address your pain issues and help you achieve a better quality of life - for you and your little one. Good Luck!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies, asthma, GERD
Daily Meds: Plaquenil, Zyrtec, Nasacort, Prozac, Ambien CR, CellCept, Zantac, Bactrim, Q-Var, Restasis, Albuterol
Daily Supplements: Calcium, B-100 Complex, Vitamin D, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Tylenal, Vicodin, Prednisone.
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