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Posts (4)

Jul 30, 2011 · Need help with Mystery Illness--Possible Sjogren's Syndrome?? in Autoimmune Diseases

I COMPLETELY HAD TYPED U BACK OVER A PAGE WORTH AND LOST IT!!! SO I APOLOGIZE, BUT FOR NOW I WILL ANSWER YOUR QUESTION, CONCERNS, ETC.. FIRST OFF I’D LIKE TO PASS ON TO YOU THAT I KNOW MYSELF FIRST HAND THAT DEALING WITH THE PING PONG OF MEDICAL DOC IS VERY FRUSTRATING. I SUFFER FROM CHRONIC BACK PAIN DUE TO SCOLIOSIS, HAD SPINAL FUSION TO CORRECT WHEN I WAS 15, AND NOW HAVE DISC PROBLEMS BELOW THE FUSION, AND GOD ONLY KNOWS WHAT ELSE, BUT BASICALLY LIVE WITH PAIN EVERYDAY AND HAVE FOR OVER 15YRS NOW. I REFUSE TO TAKE PAIN MEDS, CHOOSING MASSAGE THERAPY, ETC.. INSTEAD. I HAVE LITERALLY HAD DR’S REFUSE TO ESTABLISH/TREAT ME AS A PATIENT AND I HADN’T EVEN WALKED IN THEIR OFFICE, THIS WAS THEIR DECISION BASED ON MY MEDICAL RECORDS. THEREFORE, WHAT I AM GETTING AT IS UNFORTUNATELY THIS DAY IN TIME WE HAVE TO ADVOCATE FOR OURSELVES FIRST AND FOREMOST. SINCE I WORK IN THE MEDICAL FIELD MYSELF AS A CERTIFIED OCCUPATIONAL THERAPY ASSISTANT, I WILL ADMIT I AM CAN BE A DR’S WORSE NIGHTMARE SINCE I NOT ONLY WORK IN THE MEDICAL FIELD, BUT HAVE MEDICAL KNOWLEDGE AS WELL. ALSO, JUST LISTEN TO YOUR BODY, ONLY YOU KNOW WHEN YOUR BODY IS TRYING TO TELL YOU SOMETHING ISN’T RIGHT AND WHEN YOU FOR EXAMPLE NOTICE A PATTERN, FOR LACK OF BETTER WORDS, WITH SYMPTOMS, ETC… DO YOUR RESEARCH AND DON’T GIVE UP! SO TO ANSWER YOUR QUESTION ABOUT DEHYDRATION. HE HAS TOLD ME THAT HE HAS NOTICED EVEN MORE RECENTLY THAT KNOW MATTER HOW MUCH HE DRINKS THAT HE IS VERY THIRSTY AND THAT HIS MOUTH AND THROAT ARE EXTREMELY DRY, TO THE POINT THAT YOU CAN VISIBLY SEE THE WHITE PASTE THAT FORMS ON HIS TONGUE AND AROUND HIS LIPS. HE MOSTLY DRINKS H20 AND A TEA DRINK SIMILAR TO CRYSTAL LIGHT, AS I HAVE EXPLAINED TO HIM THAT CAFFEINATED BEVERAGES WILL ONLY DEHYDRATE HIM MORE AND SINCE SJOGREN’S CAN CAUSE DENTAL PROBLEMS, THEN HE LIMITS HIS SUGARY DRINKS TOO. HE HAS ALWAYS HAD PROBLEMS WITH NEEDING TO DRINK FLUIDS OFTEN, BUT THIS HAS BECOME CHRONIC TO THE POINT THAT HE DRINKS SO MUCH THAT HE IS LITERALLY HAVING TO URINATE 2-4TIMES IN AN HOUR. HE ALSO RECENTLY HAS BEEN HAVING MORE PROBLEMS WITH SLEEPING AT NIGHT DUE TO HAVING TO GET UP TO DRINK SOMETHING AND ALSO BECAUSE HE HAS BEGUN TO HAVE PROBLEMS WITH FEELING LIKE HE IS CHOKING WHEN HE LIES DOWN. VERY SCARY! WHEN THE DR’S AT DUKE DIAGNOSED HIM THEY WEREN’T SURE WHETHER HE MAY HAVE MULTIPLE PROBLEMS GOING ON. ONE DR MENTIONED HIM POSSIBLY HAVING SOME SORT OF CHRONIC TISSUE DISORDER, AS HE HAS PROBLEMS WITH THE TISSUES IN HIS NOSE AND THROAT AND USE TO HAVE SEVERE, CHRONIC NOSEBLEEDS, THERE ARE HOLES IN THE TISSUES OF HIS THROAT/NOSE AS IF THE TISSUE IS DEGENERATING AND ONE DR DESCRIBED HIS NOSE AS LOOKING LIKE RAW HAMBURGER MEAT. HE HAD A TONSILLECTOMY THE SUMMER ON 07′ AND TO THIS DAY THE SURGICAL SITE HAS STILL NOT COMPLETELY HEALED AND HE HAD TO HAVE 2 ER VISITS POST SURGERY DUE TO HEMORRHAGING FROM THE SURGERY, ONCE EVEN FLAT-LINING AND HAVING TO BE SHOCKED BACK DUE TO THE AMOUNT OF BLOOD HE LOST. THIS ALL TOOK PLACE A FEW MONTHS BEFORE WE MET, SO I DIDN’T GO THROUGH ALL OF THIS WITH HIM, HIS PARENTS DID. HE ALSO HEALS SLOWLY IN GENERAL, WHETHER SMALL WOUND ON HIS HAND, ETC… AND GETS SICK VERY EASILY. I CAN HAVE THE COMMON COLD AND HIS SYSTEM TURNS IT INTO SEVERE STREP THROAT OR HIS THROAT WILL SWELL UP AND BE VERY PAINFUL AND HE WILL BE VERY TIRED AND JUST LOOK PALE AND SICKLY, FEVERISH, ETC… SO VERY APPARENT THAT AS WITH SJOGREN’S HIS IMMUNE SYSTEM IS SHOT. SO MUCH 4 SHORT REPLY, LOL! I HOPE THIS HELPS AND PLEASE KNOW DO NOT HESITATE TO ASK ME ANYTHING. IF YOU’D EVEN LIKE TO TALK OVER THE PHONE, OR VIA EMAIL, JUST LET KNOW. HOPE YOU CAN FIND THE ANSWERS YOU NEED AND THE RIGHT MEDICAL PROFESSIONAL TO HELP YOU, SOON!
TAKE CARE, APRIL

Jul 25, 2011 · Need help with Mystery Illness--Possible Sjogren's Syndrome?? in Autoimmune Diseases

My fiance was diagnosed with Sjogren’s Disease by Richard L. Scher, MD : Department / Division-Surgery / Otolaryngology-Head and Neck Surgery. http://www.dukehealth.org/physicians/richard_l_scher. And also was referred to Patricia L. Lugar, MD, MS Department / Division Medicine / Pulmonary, Allergy, and Critical Care Medicine.http://www.dukehealth.org/physicians/patricia_l_lugar.

Jul 24, 2011 · Sjogren's Syndrome in Bones, Joints & Muscles

My fiance was diagnosed with Sjogren’s back in 2007 at Duke University in Durham, NC after unexplained chronic symptoms of dry mouth, chronic strep throat, fatigue, etc… since childhood. I would be more than happy to discuss this further with you and compare stories and maybe help led you in the right direction. Take care

Jul 24, 2011 · Hoping to connect and share insight with others out there that may in Just Want to Talk

Hoping to connect and share insight with others out there that may suffer from PMDD (Premenstrual Dysphoric Disorder) and have had surgery/spinal fusion for scoliosis and currently live with chronic back pain, Degenerative Disc Disease or other chronic problems related to their Scoliosis.