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Regular Member

Date Joined Jul 2016
Total Posts : 43
   Posted 7/7/2016 11:46 PM (GMT -6)   
I have normal tests: ana is OK , normal c3 and c4 ok, except the Ch50 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 doesnt 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...I am also type 2 diabetic controlled with meds.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 7/8/2016 10:28 AM (GMT -6)   
Have you seen a rheumatologist? This could very well be Lupus, remember Lupus is NOT diagnosed by blood tests, but by having 4 of 11 symptoms.

Sometimes a regular Dr thinks they know enough to diagnose Lupus, Sjogren's and other auto-immune diseases, but they really don't.

Let us know what Drs you've seen, what treatments, if any, they've tried.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 7/8/2016 9:42:52 AM (GMT-6)

Regular Member

Date Joined Jul 2016
Total Posts : 43
   Posted 7/8/2016 10:49 AM (GMT -6)   
Thanks so much for replying...Yes he is a rheumy... My friend with lupus says it sure sounds like lupus to her. I read the info on mast cells, which was a bit over my head, and I do have many of the symptoms but only about 75 percent, so not sure what to think, I will definitely mention it to the doctor He is making a diagnosis or ordering more tests today. This is the toatal message I sent the rhuemy's nurse this morning...Does any of this sound familiar to anyone?..Thanks for your help.. <3

I have been hospitalized for severe pneumonia 2 times in my 20s, in both lungs and had frequent bronchitis as a kid into my 20s (about 3 times a year) and after that I had it rarely, maybe 4 times in the last 25 years... hardly at all, I also have moderate sleep apnea which went away when I lost weight and returned with my 40 lb weight gain...Was on allergy shots for 10 years in my 20s for 4 or so allergens.
I am listing any weird anomaly I can think of:
Very sweaty palms and feet since childhood, in the last few years I break out in sweats all over, but on face and back of the neck and torso, swollen=, hard itchy vaginal walls (a new thing in the last 3 has occurred twice, I just got over a bout of it) 2 ooferectomies due to ovarian cysts. one at 16 and one at 38, secondary infertility. periods of insomnia followed by months of sleeping 15-20 hours a day on and off 12 hourse of unrefreshing sleep, followed by getting up for an hair and falling into bed to sleep 2 hours, etc Depression on and off through out my life ...(The nite sweats occur more when I have the extreme bouts of fatigue)
fibromyalgia, preeclempsia and high levels of protein in urine, low levels of blood and protein in yrine all through out my life, frequent urnation, urinary tracy infections through out my life. ebstein barr at 14 and again at 27, red blood spots on legs. debilyating fatique that's lasted for years at a time and the subsided for years, CFS diagnosis by internal med specialist at SIUE school of meds at 27, swollen glands that have lasted the for these last 2 years (salivary), red palms numbbess in finger tip , terrible pain in hands in winter weather, they sting even when I am just getting ice out of the fridge for just a second and the finders turn white from the cold...

I have frequent night sweats, sometimes wake up drenched in sweat...these occur about 4 night s a week Headaches occasionaly, flue like feeling, Painful, creaky knees, chronic fever of 99-100.4 Fever throughout my life on and off. Swelling (mild) in feet, legs, hands Butterfly-shaped rash across my cheeks and Sun- or light-sensitivity, even white florescent light brings out the rash, I have spent all summer inside. this has occurred on and off all my life but is worse now that ever

3 people with lupus have told me during the last 30 years that I have the lupus rash, but I just said I have rosy cheeks, also type 2 diabetes, and enlarged liver and pancreas when I had mono in my 20s hard swollen glands in my groin that were marble sized. The fever always shows up with swollen glands in the neck and I can have both for years at a time...Currently have swollen glands plus low grade fever for the last two years...That's all I can think of...Looking forward to hearing from you.

Post Edited (Blissy10) : 7/8/2016 1:11:48 PM (GMT-6)

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