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|Posted By : SoVA - 12/26/2016 2:13 PM|
|Hello to all the chronic pain sufferers out in blog land. I need to pull from all your medical resources and experiences to help with a diagnosis dilemma that has hit me like a tornado....as IF I didn't already feel enough pain. I will state the facts in order, with the dilemma at the end.......|
*1998 New Diagnosis fibromylgia, bursitis, treated with rest and ibuprofen
*2010 Surgery: gallbladder removed, chronic inflammation
*2010 (in addition to previous) Diagnosed with IBS - C & D, Istemic colitis, and inflammation of the colon (endoscopy and colonoscopy)
*2010 (in addition to previous) Surgery and New Diagnosis hysterectomy, chronic inflammation, fibroid tumors and chronic endometriosis
*2012 (in addition to previous) New diagnosis of chronic fatigue, anxiety and depression
*2012 (in addition to previous) New diagnosis Sleep Apnea (sleep study results),
*2014 (in addition to previous) New Lupus diagnosis - with blood test results of Positive ANA, sedimentation rates and trace protein in urine, light butterfly rash across bridge of nose and cheeks (redness and splotchy dots of darker red appearing just below the skin--not raised or scaly) and physical exam, lupus arthritis, lupus bursitis, lupus tendinitis, myofacial pain, mitosis, fibromylgia
*2015 (in addition to previous) New Diagnosis of Poly Peripheral Neuropathy (based on EMG), Chronic Pain, Advance Degenerative disk disease, Cervical and Lumbar Radicolopathy, Facet Disc Disease, Spinal spondylosis, sciatica, severe advanced osteoarthritis (all lupus related) based on 3 MRI's and x-rays, gastritis, esophagitis, duodentitis, hiatal hernia
*2016 (in addition to previous) NEW diagnosis of UCTD, MCTD and Early Sjogren's (with blood indicators of potential Scleroderma and CREST).
Now....before you read my dilemma........DAILY Symptoms for me are head-to-toe nerve pain, muscle pain, joint pain, joint swelling, numb fingers, sharp nerve pain from elbow's, through wrists, tendons in feet, sciatic nerve pain left leg, constant intense lower back and neck pain, bursitis in right shoulder, migraine and "regular" headaches, chronic fatigue, IBS diarrhea and constipation occasionally, easily choking, re-flux, inflammation of the esophagitis (diagnosed with Endoscopy, Images) and cognitive impairment -- memory loss and difficulty SOMETIMES with calculations, spelling, verbally finding the word I am searching for, etc.....and some craziness......to anyone who does not SHARE in these HEALTH issues.....a lot of crazy!
*(all other diagnosis have been from specialized medical professionals....2 rheumotologists previously, a neurologist, a psychiatrists (pain management), Dr. of Physical Therapy, generalists, Dr. of internal medicine, 2 PA's, poditrist, Gastroenterologist and a neuopsychologist.)
*NOW......NOW TO MY DILEMMA.....................drum roll.....................I saw a new rheumatologist last week.....(he is considered very knowledgeable and does research with Lupus issues).
He walked into the room, only asked "what have you been told you are diagnosed with?".....I replied, "well, I was told I have Lupus and I also have Poly peripheral neuropathy, IBS, ..aaahh"
*then cut off to what he said...."you do NOT have LUPUS"....
*well, after my head spun around backwards like someone out of the Exorcist......I looked very confused...to his reply...."and I will tell you why"....
*"Your positive ANA and other blood work "say" you have Lupus, but MANY healthy people have a the same blood work result and they do not have any disease." He said, "as we get older we ALL get Positive ANA results eventually." What causes it, he asked? "Well, having a surgery, having a baby, anytime blood is mixed in your body the center of the cell, the nucleolus, gets released into the bloodstream and that then gives an ANA positive, but it doesn't diagnose disease."
*"Your physical symptoms, chronic fatigue, chronic pain, joint swelling, sleep issues, muscular-skeletal, digestional and intestinal issues, IBS, headaches, advanced arthritis, Sacroiliac Joint Dysfunction, Cognitive - brain fog, visual disturbance - blurry vision" do NOT mean Lupus.
*He said, "You have fibromylgia" and that is all...no Lupus, not Poly Peripheral Neuropathy, Not any of the other diagnosis. It is chronic fibromylgia."
*I say then...... ***??????
*So now...your opinions, please....based on your test results, your symptoms, and YOUR professional diagnosis.
|Posted By : Lynnwood - 12/26/2016 3:14 PM|
|1) We cannot give you "professional diagnosis" because we are not Drs and even if we were this is a peer level support group.|
2) Symptoms of many diseases overlap. Lupus in particular hides. It is NOT diagnosed by blood tests, but by having at least 4 of 11 specific diagnosing symptoms.
1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurologic disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.
3) "lupus arthritis, lupus bursitis, lupus tendinitis" - I don't know who told you this, but it would never be said this way. You may have Lupus that has aggravated arthritis, bursitis, tendonitis, but you'd NEVER go to a Dr and have them say, Oh, this bursitis, it's "Lupus Bursitis". This just isn't how anti-inflammatory diseases work.
4) Have you been treated? What has worked? What hasn't worked? Sometimes the only way to distinguish between Lupus and Fibro symptoms is in testing the response to medications. For instance, Prednisone often IMPROVES symptoms if you have Lupus, while it usually has NO EFFECT on Fibro symptoms.
5) Did this Dr offer any treatment? If so, are you planning to trust his reputation, training, and experience and try it? It does sound like you've been chasing the same symptoms for a while -- if someone is suggesting something different, where other treatment has not been helpful (I assume it was no help since you are seeing a new Dr.) -- you might try the new treatment for 6-8 months to see if it helps.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde