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Lupus

Sep 17, 2015 7:53 AM

Can everyone please tell me what they're symptoms are for lupus/fibro/RA etc are.. And how long it took to get diagnosed and what the doctor or rheumy tested to come up with the diagnosis. Thanks in advance!!

Sep 17, 2015 7:59 AM

Still in the midst myself. My dx so far: chronic pain from trauma, fibro, undifferentiated connective tissue. They have done blood work a lot and tried meds. Things "progressing" so yesterday ct scan of chest with constrast.

Great post I'm curious too. Love my doc but not clear enough answers. Then again it is rheumatology. It's a very unclear category

Sep 17, 2015 8:40 AM

It's frustrating isn't it! Hope everything is ok with the chest Ct. I'm also in the midst of it all and see a rheumy next month! this has been ongoing since end of 2012. I was just wanting others symptoms and how their doctors determined a diagnosis to compare it with myself. I've seen normal GP's and they have dx a connective tissue disorder, thyroid disorder and autoimmune disorder although I need a rheumy for specific dx according to my gp so next month will be great to have a final dx! I've been for countless bone scans, Cts, blood tests, X-rays etc. it is annoying that it has taken 3 years with a heap of different doctors telling me this and that, and then I found a great one 2 months ago who gave me that dx and the referral to the rheumy and to see a surgeon! And yes your 100% right about rheumatology being an unclear field!!

Sep 17, 2015 10:06 AM

Thank you. I'm okay with the unknown most days. Others I get completely overwhelmed and shut down. It's a rheumy roller coaster

Sep 17, 2015 10:33 AM

Donald, I started with fibro after major inflammation due to a large and mass. I get deep aching tender points, painful if pressed, and the muscles hurt like I have the flu. I get muscle spasms, fatigue or abnormal tiredness, varied degrees of insomnia, IBS, GERD, migraines & cervicogenic headaches, OAB & interstitial cystitis, depression, anxiety, low tolerance of exercise/activity, TMJ/TMJD, and swelling in legs and feet (vein reflux), numbness & tingling & burning sensations in extremities and face, OA & spinal disc issues from years to collapsing, Sjogrens (and all its drying affects & pain similar to my fibro & hypothyroidism).. It took from 2008 to 2012 to diagnose the fibromyalgia. The pelvic floor dysfunction and pelvic congestion syndrome came as a result of the mass in 2010. The PFD affects my IBS and bladder. And the PCS contributed to the venous reflux, diagnosed last month. The sjogrens, dementia/memory worse than just fog, and hypothyroidism were diagnosed earlier this year. I'm still awaiting a dx on the dementia/memory issues, tremors, dizziness and imbalance. There are other diagnosed issues (20+ years) but they are less problematic.

I've had multiple blood tests, US, EMGs, CTs, MRIs, and surgeries that helped diagnosed. A biopsy of buccal tissue inside my cheek gave the best id of the sjogrens. I was surprised to find sjogrens shared so many symptoms with fibro and hypothyroidism. They were able to rule out lupus due to my blood work, but they suspect MS (4 docs), and that's why I'm going to Mayo.

I wish you the best in diagnosis, treatment and physicians. 🙏🌼

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