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Date Joined Jul 2016
Total Posts : 43
   Posted 7/7/2016 10:23 PM (GMT -7)   
I hope you don't mind an additional question...I have normal tests: ana is OK , normal c3 and c4 ok, but the Ch50 which is high (over 60) sed rate 20 and crp 5.6, I have the butterfly rash, extreme photosensitivity, break out in hives, tingling fingertips that sometimes swell, debilitating fatique (and I mean DEBILITATING, sleeping 15 to 20 hours a day for weeks in a row, and then I am OK again) and swollen glands under my jaw for the last 2 years. Does anyone know what this could be since it doesn't appear to be lupus? Very concerned and confused... Thanks, any insight would be appreciated. Dr says its just fibro, which I know I have, but I cant make sense of these ongoing swollen glands. They suspect sjorgrens but the tests have come back Ok for sjorgrens too...The exhaustion is the worse thing, and the only thing that has managed to keep my energy level up is a low dose of phentramine for weight loss. Off the phentramine, I am too weak to teach, and consider myself disabled at this point.

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Date Joined Jun 2006
Total Posts : 1650
   Posted 7/30/2016 8:00 PM (GMT -7)   
Hi Blissy10. One of the many unfortunate things about autoimmune diseases is that symptoms often appear long before antibodies become lab positive. I was sick for 2 years before being diagnosed with lupus and like you fibro was diagnosed first. Fibro is diagnosed with history and physical exam (pressure points) and ya don't have to wait for antibodies to develop. I have secondary Sjogren's and have had swollen salivary glands under my jaws, under my tongue, the bottom of my mouth, and swollen parotid glands all of which are painful so I'm sorry you are going thru this for so very long.

I'm an educated woman who worked a demanding job when I became sick. My rheumy's goal (besides diagnosing as many autoimmune diseases in me as possible ;) was to keep me working. He put me on Plaquenil before my lupus diagnosis partly because it takes so long for patients to respond. My psychiatrist gave me Provigil to help with the energy and Ambien for restorative sleep. That 20 hours you're getting is restful sleep. My employer transferred me to a desk job. Even with this I would get home from work, eat (frozen comfort food), bathe (sometimes asking Hubby to turn the faucets on), sleep, repeat.

Regardless, 4 years later I had to apply for disability. I know I'm rambling, but this last tidbit is very important: obtain medical records from every physician you have seen since your illness began and all medications. If you do still work, you need to be able to show that they and you have made an effort to find less demanding work for you. You can still get disability, but the letters from your docs stating you are unable to work will need to be excellent letters. Please keep us posted okay? Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Veteran Member

Date Joined Aug 2006
Total Posts : 9657
   Posted 8/16/2016 10:41 AM (GMT -7)   
Like what Butterflake said it can take years to get the appropriate diagnosis, hang in there.
Ask for a hand and foot mri, that's where my RA showed up, my bloodwork was all normal, except for low B-12s and low D, both of these being low adds to the feeling of being very tired and pain.
Keep us posted...
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
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