Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

Posts (4)

Oct 3, 2014 · Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan

Hi,

Yes I did receive your email. Thank you so much. I\’m just winding down for the night and was just about to email you.

I really appreciate you taking the time to respond. It means alot to me. I si badly want to help my sister figure this out. Because she is so beaten down by it all and has very little support, she\’s doesn\’t even realize how bad she needs help. My next step is to get her to the clinic

Your insight into the doctors not ordering certain tests because of cost was very informative and helpful to know. Its amazing how the system really works.

Sounds like you had a rough couple days yourself. I hope you are feeling better. I will definitely keep you posted on my progress. Have a good night..

Lauren

Oct 2, 2014 · Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan

Hi,

I am curious as to what it was the rheumatologist saw in your blood work that led them to a lupus diagnosis? I ask because my sister was tested for lupus and no markers were seen, although I suspect her illness is in the lupus family. I understand if it\’s too hard to explain or private…

Thanks!

Lauren

Sep 28, 2014 · Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan

Thank you so much for responding. I am calling the Mayo Clinic tomorrow to find out what I need to do to get her an appointment. I feel like this is her only hope.

Lauren

Sep 28, 2014 · Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan

Hi Karen,

I am responding to you because I am desperately hoping to get my sister to the Mayo Clinic soon. I live in Chicago and she is in Cleveland battling an undiagnosable illness. Your story has so many similarities. I want to share in hopes of finding any answers whatsoever that may help us. My sister is 47 and for the last 6 years battling illness that cant be diagnosed. She has had every blood test in the world, and nothing comes back significant. The doctors keep telling her it must be depression. This is the most ridiculous thing I have ever heard. It seems her symptoms are getting worse and more serious. Its beyond my comprehension that she is being forced to live like this. I want to tell you as best I can what her symptoms have been. Oh so many, but maybe someone out there can help. About 6 years ago she woke up with a large bruise on her breast. Since that began, she continues to get brown spots which appear to be some form of bruising appear out of nowhere. She seems to think the bruises are a pre-cursor. She then will get large swollen lymph nodes in the back of her head on neck, she gets joint pain in her thumbs and hands. She had neck surgery to remove 2 discs for pain, she has had recurrent strep in the last 2 years at least 8 times. She has had double vision and passed out driving last year. She had a pneumonia like condition about 4 years that was odd. She has itching and a dry cough that just wont go away. She had a sore in roof of her mouth, anal itching that wont go away,fatigue..acid reflux..About 2 months ago she had severe left side pain for 4 weeks. Blood work showed elevated lipase which refers to pancreas. they told her she must be having a pancreatitis attack from eating fatty foods and to just eat better! she is now having another seemingly pancreatic attack. waiting on blood work. how can doctors not take something wrong with your pancreas seriously. she is in severe pain and nauseous. she had extreme hand pain recently as well, and they gave her a strong med. which seemed to help a little. they thought it may be lupus but no blood work indicates so not treating. she was on plaquinal once for short time. did nothing to help. she is so emotionally beat down. people begin to stop paying attention because you become the person that is always sick. i feel like i am her only hope in helping her. she cant live like this anymore. the only things that have come back irregular in her blood work over the last few years is her parathyroid was high, and they think bc of low vitamin d, her lipase levels recently high and she tested possible for parvo at some point in her life. she recently had an immunity panel done that showed she had no immunity to pneumonia and strep. The question is, WHY! i feel like her symptoms are autoimmune, but why nothing showing up. i feel like the doctors are totally missing the boat here on something. she continues to get shuffled from doctor to doctor. no one really seems to care. her most recent doctor the other day told her that she ‘s dying the slowest death of anyone she knows. that was her response to my sister telling the doc she feels she is dying. this is serious business. we are desperate for answers. my sister is so beaten down, she’s starting to give up. if there is anything about my story that anyone out there can relate with or help with, please respond. I know i have missed a bunch of her symptoms. Thank you for taking the time to read this long post!

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