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I'm not crazy!
TTMarie posted:
I can't tell you what it felt like to read about lupus and to know that I am not crazy and that all of the symptoms I have had for so long are possibly all connected! I have had blurred vision that comes and goes and was just told it was lack of oil production, I have had severe hip pain for months, strange rashes, yeast infections, hard to breathe at times, extreme fatigue daily, mouth sores...the list goes on. I never ever thought to put them all together! I went to my doctor last week and was told my ANA ?was positive and that he was going to send me to a Rh. Specialist, so I came home to google it. I just assumed it was for arthritis until I kept seeing Lupus popping up. I started reading and just cant stop......Tears are flowing down my face, as I read other peoples stories, who are experiencing the same things I do. Please god let me get this nightmare diagnosed! Thank you for this site and for all of your stories!
illinkennyboy responded:
Hello TTMarie,

I am a caregiver for my wife and your post strikes home. We can't seem to understand why there is such a seeming disconnect from the medical community when symtoms are so prevelant. It seems as if doctors don't believe your symptoms are really there. My wife is going through almost the same things you are describing. The frustration of not being diagnosed has led to a terrible depression for her. There are days she won't even get out of bed. She's awakened in the middle of the night with horrible leg pain two or three nights a week. They're saying it's an auto immune problem (isn't Lupus an auto immune problem?). Lack of presentation in blood tests are what's keeping them from saying the word Lupus to us. We are going to a doctor at Brighams and Womens Hospital in Boston. We like him very much. He is at least sympathetic to her pain, but feels the meds would be worse for her at this point in time. I just want some semblance of a life for her and a diagnosis would help! Thanks for sharing!
LupyLoo replied to illinkennyboy's response:
I understand perfectly what you are saying. The best way I can describe the only true way of diagnosing lupus is that if you don't get a blood test at the exact time or day when the ANA's and the Creatins are not elevated, then you just go undiagnosed. It's similar to the sun, Earth and the moon all having to be in a certain position to have an eclipse. I was diagnosed by accident, I think. Not knowing that I was having any symptoms of lupus, I had a routine blood test but with a few more tests added on. The nurse called and told me everything looked good but that I had elevated ANA's but she couldn't explain what that meant. She told me that I had been referred to a Rheumatologist and I just assumed it had something to do with arthritis. Man was it a shock when he told me I had lupus! And the only thing that I have learned from him specifically is that one day I will wake up and feel like a 90 year old woman with painful joints! I have learned every other detail about lupus online and WebMD has been the best source of my knowledge. Someone recommended that I check out the Mayo Clinic site, also. I'm sorry to hear that your wife probably has lupus, but it's much more bearable somehow to know that there are others out there that she can commiserate with and to get more information. God bless.

LupyLoo responded:
I did not think that I had any symptoms when I was diagnosed with lupus. My doctor only told me that one day I will wake up and feel like a 90 year old woman with swollen joints. Every piece of information I have learned about lupus I learned ONLINE! Which is a disgrace as far as I am concerned and plan to let my doctor know about it. I am currently in a lupus "flare" and am now experiencing things that I had only read about before. Don't particularly care about them but have no choice in the matter. I am experiencing photo-sensitivity for the first time and get ugly rashes with either SPF 50 or 70. It hurts to believe that I may never be able to be out in the sun for more than a few minutes someday, or that I may never be out during day time hours. Good luck with your meeting with RH. Specialist and I pray he tells you more than my dr. did! God Bless.

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