Hi all,
I was just diagnosed with Wegener's last week. I've been sick for years though and the past 5 months I've felt like I'm going to die. I had sinus surgery preceded by a Tetanus shot in January which seems to have set me into a severe flare. I have been on steroid bursts and antibiotics several times in the past, and can't wait to see my Rheumatologist this next week as I'm hoping for anything to help relieve these symptoms.
Other Diagnoses: CREST Syndrome (Calcinosis, Raynaud's, Esophageal Dysmotility, Sclerodactyly, and Telangiectasia) - which is basically a connective tissue disease, Sjogren's, Lupus, Chronic Kidney Disease (CKD Stage II), Irritable Bowel Syndrome (IBS), Interstitial Cystitis (IC), Temporomandibular Joint Disorder (TMJ), Insomnia, Arthritis (in several area including the spine), Allergies
Doctors Involved in Care: General Practitioner (GP), Rheumatologist, Integrative Medicine, Ears/Nose/Throat (ENT), Pulmonologist, Gastroenterologist (GI), Hematologist, Dermatologist, Cardiologist, Ophthalmologist, Endocrinologist, Gynecologist, Podiatrist, Oral Surgeon, Dentist, Psychiatrist, Psychologist, Physical Therapist
Current Symptoms: Severe sinus pain/pressure/bleeding, increased mucus production, ear pain/pressure and hearing loss, eye dryness/pain/pressure/blurriness, IBS-D, Neuropathy - numbness/tingling/burning of feet/legs/hands/arms, Joint pain and dislocation (hip, jaw, and shoulder), skin breaks open, low vitamin D, low vitamin B, swollen throat, swollen stomach, acid reflux, insomnia, severe fatigue, blood in urine (IC), hemorrhoids (thanks IBS-D), cough (productive sometimes), day chills/freezing, night sweats, headaches and migraines, wrist and ankle pain/leg and arm pain seems muscular, nausea, choking (especially on increased phlegm), small hiatal hernia, decreased libido, weight gain with inability to lose it, bleeding mouth sores and corners, intense breathing difficulty, vomiting, poor memory, unable to lay down or lean over due to sinus/ear pain/pressure, belly pain/bloating, pain when walking, laying, or sitting
Surgeries/Procedures: Sinus (polyps removed, deviated septum, turbinate reduction), Dental implants (multiple), Bladder distention and urethral dilations (multiple), full hysterectomy after multiple DNCs and ovarian cysts bursts, tissue infarction that caused gall bladder failure and removal, hemorrhoid banding multiple, tonsils and adenoids removed, allergy shots for about 5 years
Tests: Multiple blood, Upper and Lower GIs, X-rays, CT's, MRIs, Urograms
Medications and Over the Counters (OTCs): Estradiol, Allegra-D, Famotidine, Zyrtec, Montelukast, Fluticasone, Benadryl, Albuterol, QVAR, Clobetasol, Sustane, Tobradex, Lotemax, Pataday, Restasis, Paroex, Cyclobenzaprine, Azithromycin, Cipro, Metronidazole, Probiotic, Vitamin D, Vitamin C, B Complex, Multivitamin, Fish Oil
Other: Current diet FODMAP but have previously done Atkins. Previous history also includes severe C-DIFF, pneumonia, bronchial inclusion cyst, and tachycardia
I'm sure I've forgotten some things, but this is all I can think of now. I have to say I love the way this forum is set-up. I was able to find a doctor and get treatment for my childrens' rare autoimmune disease by using the Latitudes forums, but this GPA site is much more clean and well maintained, which makes navigation so much easier. Good job!
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