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Thread: finally some answers!

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    Default finally some answers!

    I finally was diagnosed after a series of blood tests confirmed what a friend of mine had suggested it may be Lupus that I have. I'd been dianosed with everything from Carpal Tunnel Syndrome, to Chronic Fatigue, to Fibromyalgia. I've had chronic headaches for years, blamed the rashes and sun sensitivity to being a redhead, the fatigue, lack of energy and pain on being a plus size gal, and other symptoms on other possible connections. What had been confirmed over a number of years is that I do know I have Raynaud's disease. That was diagnosed 9 years ago, and over time has progressively worsened. I have also been told I am anemic over the course of several years, but was always sent home abd told to take a multivitamin and an iron supplement. For the past 8 years, I'd lived in an upstairs apartment, and in July, I became so weak that I could no longer climb my stairs, though I'd been only somewhat been looking for a downstairs apartment or a place with elevators. It happened that in early August, a wonderful little cottage actually found me. I'd done all the paperwork on this house and had gotten the key on August 15, and was slowly going to move my stuff and actually formally move in and give up my old place at the end of August. Though I'd continued working despite severe fatigue and pain, I knew I was ill aside from my Raynaud's, which I found extremely difficult to believe would be so bad given it was 100 degrees outside. On the 12th of August I went to see an associate of my family doctor, since my primary doc was out of the country. This doctor looked at my fingers and hand, noted the extreme discoloration and the coldness of my skin and said it was simply my carpal tunnel acting up... no blood work ordered or tests of any kind, she simply told me to wrap it in ice and take Motrin 800 to bring down the pain and swelling. By the 17th, the pain was too much to tolerate, so I had my best friend take me to the ER of a local hospital, where tests established that I was SEVERELY anemic, with a hemoglobin level of only 5.6, and would need a transfusion of at least 4 units of blood. I was admitted into the hospital, was given the transfusions, and doctors began to explore why 3 fingers on my left hand had been in varying degrees of tissue damage (one finger was completely a dark purple, almost black color, while the other 2 were cracking open, a ghostly white color on one finger, blue on the other). More tests were ordered to determine why my hand was behaving as it was. At that time, all the tests had shown was that I had an autoimmune disease. Two days later, I was released having been transfused, and told to make an appointment with a doctor associated with that particular hospital since my own GP was away. This new doctor took one look at my damaged hand and immediately ordered ultrasounds, more specialized blood tests, etc. The hand, teasts shown, was not getting any blood flow at all while compressed, and only very minor amounts of blood when relaxed. The tests also came back as it had while I was in the hospital; that I had an autoimmune disease of unknow origin. More specialized tests more or less confirmed Lupus through process of elimination. I was told to quit my job being unable to sit, stand or do any activity for any period of time. I was prescribed 40 milligrams of Prednisone and was being monitored closely. More drugs to help thin the blood and counter the pain were ultimately prescribed, and I am still being tested with different variations of different drugs to see what works. In the course of 2 months, I went from being very independent and mobile to being either bedridden or in a motorized wheelchair, losing the use of my entire left hand from the mid forearm down, and forcing to give up driving due to a very steady decrease in my vision to the point that I can no longer clearly read anything more than 18 inches away. I'm now being seen by 7 doctors at 3 different facilities, averaging an appointment every 2 weeks, with tests being ordered at that same rate of time. I'm depressed, of course, but all my needs are being met by friends and family members. Pain medicine, drugs for depression and anxiety among othrs keep me essentially in a whole other universe, but I'm hopeful. Have to be positive a remission will come, while maintaing a sense of humor, no matter how depressed and pained I feel. All the doctors I see all say mine is as complex a case as they've seen, and that I'm in for a very lengthy and costly course of treatment. Gotta do what I have to, while grinning and bearing it.

  2. #2
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    Shadrat, I am so sorry. That sounds absolutely awful. {{{HUG}}} I really hope they can get you up and around again soon. Sounds like you have a good team of drs now to help with that.

  3. #3
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    Thank you, Tracy. I am actually quite taken back at the degree my medical team are all working together. No big doctor ego thing going on at all. I have a physician's assistant, a nurse practitioner, my gastrointerolgist, my new primary care doc and two residents working with me now while I await my appointment to see a new rhuemetologist. I'd been referred to another rhuemetologist soon after my diagnosis, but he was so arrogant and obnoxious that I simply went back to my primary doc with the tests that first rhuemetologist had ordered, gave him the papers with the tests orders and had him simply order the tests himself. I made it clear that a return visit to that particular rhuemetologist was out of the question. The one I think that has gone way beyond the call of duty is my gasrtointerologist.... I'd been seeing him for 7 years now, as he's been treating my pre-existing Barrett's Esophagus (a pre-cancer of the esophagus) and hepatitis. I'd gone to see him for my 3 times a year followup on those 2 conditions (he is associated with an entirely different hospital the next state over), and when he saw how I'd deteriorated physically since I'd seen him in early summer, he immediately ordered copies of my records from the hospital and my primary care doc, then called my primary care doc, and after speaking with him, called in 2 nurses, my pharmacist and the 2 residents with me present and basically said, "we have one very ill lady here, and here's what we need to do...", so I have a multidiscipline team of several members at both clinics who are working together to lessen the severity of this flare. All have said that they would normally not follow this protocol, but because my case is so bizarre and so progressed that they decided that input from several docs and auxilliary staff would benefit me more than having only one or two doctors from only one facility working with me. Believe me, I was totally blown away at how they've dedicated themselves to working together. Just knowing that they care that much is a big boost in itself!

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