I struggled for years with extreme fatigue, major skin problems, muscle weakness, escalating eye issues, and a host of other unexplained symptoms. I moved to Georgia with more and more symptoms. I developed relationships with new doctors and developed new symptoms – seizures and heart-related syncope. I went to see a neurologist, who began to run tests. In the meantime, I had regular quarterly blood panels by my regular physician, who upon reporting to me by phone noted no irregularities. I was told time and time again to stop chasing a diagnosis. My family continued to watch my decline.
After running numerous tests, my neurologist could only ascertain that I may have had some mini-strokes. My neurologist referred me to a major university hospital. After two visits, and being practically laughed out of the place, I began to have serious doubts about my symptoms and began to believe the many specialists and psychologists who told me it was emotional response.
I got up my nerve, went to my neurologist and cried like a baby in front of him, telling him that there is no way my symptoms are in my "head." - Karen Gibson
I had to do a lot of soul searching to make my next move. I got up my nerve, went to my neurologist and cried like a baby in front of him, telling him that there is no way my symptoms are in my "head." I asked him what he thought I should do next. He told me he felt that my only move next was to visit Mayo Clinic, and he made a referral for me.
I began gathering all my records. I received my blood panels for the previous year leading up to my clinic visit. Upon receiving them, I noticed that there were several flags on all of them for the entire previous year. Armed with blood panels, MRIs, heart records and everything else I could find that related to my symptoms, I got my first visit with Mayo Clinic.
It is truly an amazing place. My first visit was two days, and in that time, they had an initial diagnosis and suggested treatment course. I was truly amazed at their patience, caring, organization and listening skills. Not to mention their immediate response to my health concerns. From my very first day, I experienced the organization and empathy of staff members. When I saw the doctors, they were on time and engaged. They truly listened, paid attention, asked questions, and did everything they needed to do without rushing me out the door wondering what just happened.
I have had two visits, and I am about to make my third journey. I live out of state, but I don't care. It has meant so much to me to finally know what my medical conditions are and that I have begun my treatments. It turns out that I have a diagnosis of myasthenia gravis and lupus. My symptoms are classic for both conditions and make so much sense now. It has been such a blessing to now understand my health conditions and work to live with them and make my quality of life as good as it can be.
I am forever grateful to Mayo Clinic, and they truly are a team. While it isn't an easy life, I can now make it a quality life. Before Mayo Clinic I was having difficulty just getting out of bed, and now I get out of bed do chores, go out to eat, and do things I used to take for granted. The Mayo Clinic Team is the best there is.
There are no words to describe how relieved I felt once I understood my conditions. No one wants to hear it, but everyone needs to know Mayo Clinic has now given me the knowledge and strength I need.
This story was written by Mayo Clinic patient Karen Gibson.
I am on tears. This could be me. Eight+ years. Many docs. ...PCP. Neurologist. Rheumatologist. Pulmonologist. Cardiologist. Opthalmologist. Gastroenterologist. Hematologist. I've even been going to Wake Forrest Univ in hopes that as a "study school" they can get a handle on this. I've had very high EBV titers for years. They used to put the fatigue, fevers/nightvsweats, skin rashes and itching off on that. No treatment except atarax to calm the nerve endjngs. I've had reoccurring swollen lymph modes that have been removed and biopsied. Vision issue)(corneal clouding and I can't see anything up close without glasses). Chronic bronchitis. Anemia. Heart palpitations. Weakness and muscle/joint pain. Chronic inflammation. Now I'm having abdominal and serious GI issues (colitis and IBS after being treated with antibiotics for an abdominal abscess), I'm 48 and I feel lime I'm 98. I work full time and its all I can do to get through my work week. I've said for years this is not all in my head. I don't sit around in a lotus position chanting and asking to wake up in a full body rash with swollen nodes and itch for weeks at a time. I'm not crazy. I'm sick. And I need answers. I've gotten to the point I'm ready to say no lore doctors and bills and tests!!!! What doesn't kill you makes you stronger. Yes!?!? Then I read this. Maybe there is hope that it won't be during an autopsy that they figure out what has been wrong with me all this time.
Karen, I can empathize with you in regards to suffering for so long with no diagnoses, doctors telling you there is nothing wrong it's only in your head. I too went through the same process after telling my post-operative heart doctors not to use nickel in me. After a three year battle with flu like symptoms, continued heart issues and begging my new family doctor she set on a path to run every test possible after two years I was finally sent to Mayo Clinic in Rochester Mn. I spoke with an intake doctor that was doubtful that surgeons there could help that doctor sent me to a neurosurgeon. As soon as the surgeon opened the door after he had read my file that was ow over 5 inches tall and after he spent 5 minutes just listening he recognized my symptoms immediately and wanted to do surgery the next day. however I had taken the trip by myself so I arranged to have it done the next week. After 7 months and removing the staples from my chest after heart surgery I'm starting to feel better. The nickel was poisoning me every day, it was leeching into my system. Thank you Mayo Clinic for giving me back a life..
Hi Karen , My name is Mark , just wanted to share a story about my Mom ,she went to doctor after doctor for years saying something was wrong with her ,they kept telling it was all stress related ,but she went to one doctor and he found out that she had Myastenia Gravis ,which she faught a long 30 + years battle had her ups and downs with health issues because of the Myastenia Gravis ,but she passed away 1/2013 at the age of 84 ,she was on predisone for the 30 yrs and that had really taken battle with her bones ect ,so hang in there and keep in fighting .Thanks for sharing your story .Mark Connolly
Karen, I was in tears reading your story. I too struggled for years with fatigue, muscle weakness, vision problems etc.. In 2010 I had to have a total knee replacement. After the surgery my other symptoms escalated. The doctors (including specialists) told me they felt it was all from emotionals issues. Then in the summer of 2010 my family had sent me for a chest xray to check for pneumonia. The office called to let me know they had found a tumor in my chest by august I was in surgery with a nerosurgen who removed the tumor with my thymus gland. After the surgery I had developed major respetory issues. The doctors continued to believe it was all in my head. I too decided I needed to go to the mayo clinic to see if the could help me. Upon getting to the clinic for my appointment the staff & doctors were very professional and caring. I was blessed to be able to see the head doctor of neurology. After just 10 mins with him. I was given the possible diagnosis of mg. After the numerous tests and the neurologists going over the records I had brought to them I too was given the diagnosis of mysthenia gravis. I am very grateful to the doctors & staff at the clinic for all they have done for me back then. I pray you continue to enjoy life.. Thank you for sharing your story.. God Bless!
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!