About Me: Female, 60, Belton, MO, member since Dec 2008
I have been diagnosed with MS, Systemic Sclerosis, with Scleroderma Esophagus, Barretts Esophagus, and now a very enlarged esophagus with no peristalsis, Gastroparesis, Raynauds and Erythromelalgia, which has come back with a vengeance after a reprieve for several years
[More] after about 10 years of suffering after my dx at Mayo. Sleep Apnea, as well as lung damage from chronic aspirating while sleeping means I am on O2 while at home and while sleeping (I hate my bi-PAP machine!), Autonomic Dysfunction, and almost no Serotonin mean I can't regulate my body temperature - yuck, Low Thyroid, Osteoporosis, Interstitial Cystitis, Sacroiliitis, Spinal Osteophytes with narrowing and bulging Cervical discs. I suffer from joint pain and as might be expected from the list of dx, symptoms that make each day "interesting" , and specifically arthritis in the knees, back, shoulders and hands, as well as Carpal Tunnel. I also have severe TMJ from a damaged jaw joint. I was recently Diagnosed with Diabetes, (thought maybe Type 1.5), as well as severe Atherosclerosis and A-Fib. My liver is enlarged, my Pancreas is greatly enlarged and has dilated ducts and a mass at the head, and the Bile Ducts are also dilated, so I recently had a shunt put in. My spleen has a mass they can't biopsy due to my bilateral Atelectasis in both lower lobes of my lungs. There are two nodules in my right lung (being watched), and frankly, if I think about all that's going on in this body, I can't understand how I got so "special". I can't see any specialists unless in the hospital due to being on Medicaid, but have a caring internist. My neuro is too overwhelmed by my case to say much other than I need "fairy dust" (true statement), so I stopped going to her. There as yet is not an MS specialist nor Endocrinologist who will see me - thou the Endo will consult in the hospital. Every doctor I see is stumped by the magnitude of complex disease processes plagueing me. I manage though, by Grace and with a determination to enjoy family and all that God has given us. The frequent aspirating is causing great trauma, due to esophagus and LES laxity, causing lung injury & frequent pneumonitis and pneumonia. When this happens, I'm forced to stop and fully realize my illness. I also have mild Pulmonary Hypertension, that is still on occasion still in normal range. I also have mild Left Ventricular Diastolic Dysfunction, that so far isn't causing much of a problem, but will watch it. 3 of my heart valves leak, and with my corotid arteries 60% blocked and the arrythmias etc., my heart has become much more of an issue. Labs show low potassium, chloride, hemoglobin, hematocrit, serotonin, vit D, and thyroid, and high bicarb, RDW, CRP, ANA, and glucose. Periodically other abnormalities as well. To me, these are clues to follow to see what might be either causes, consequences etc. that could lead to getting better? (Never give up I say!) MS symptoms so far have been nerve pain in various places, parasthesias, balance issues, short term memory issues (but who doesn't?), word find, and severe fatigue that comes on like a freight train, 1/2 of my face getting suddenly hot, trigeminal neuralgia and weird sudden sharp pain in specific places that during an attack make me look like a freak - there are places that suddenly itch so bad, I can't even stop scraping my skin with sharp objects. Left side of face & head burn periodically etc. Boy, what a mess - BUT I DO HAVE A SENSE OF HUMOR STILL! I love my kids and love to laugh. I've got a great relationship with my daughter, 21, and son, 19. We all suffer from the years of abuse from my ex-husband. Seeking God is my 1st priority, followed closely by mentoring and loving my kids. (Not to mention my dogs)
I used to/ be very very active & still have the desire to be. I was an Interior Designer before I became too ill. My sense of Humor gets me through the really tough times. I love Jesus and have learned a lot about why I'm here on earth - that it's not all about ME! - through all my suffering. My daughter is at K-State, and is a senior, applying to Med Schools. My son, still suffering from the years of abuse lives at home with me. I'm divorced from my abusive spouse after 27 years of marriage and know it contributed to my illness. Immune Systems aren't meant to work well when you're being mistreated year after year. I have three dogs and LOVE them.
If I get any more illnesses I won't be able to remember all of them! Rapture anyone?
So sorry you've been sick. I had pneurmonia many years back with a fever like that, and was in the hosp. for nearly a week. You realy need to find out if that's the best route for you. Hope you feel better soon! ess
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