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Posted by iggeez (@iggeez1416) · Fri, Aug 15 at 3:07pm CDT

Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan

Karen Gibson at Mayo Clinic with her husband. I want to share my story to possibly help another person and to hopefully help others who are still facing their own health unknowns.

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.


HELPFUL LINKS

lupus Myasthenia Gravis Patient Stories

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Jan Trent (@jantrent) · Wed, Aug 27 at 9:36pm CDT · #

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.

iggeez (@iggeez1416) · Thu, Aug 28 at 4:32am CDT · #

Hi Jan, Thank you so much for sharing your story. I wanted to reply and let you know as I suspect you already do that you are definitely not alone in your pursuit of your medical truths. Your story is very similar to mine and I did say to myself, I hope I am not dead before they figure it out. I encourage you to continue to seek answers as I did until you find them. Please do whatever you can to get a referral to Mayo Clinic and see if they can help you. In the meantime, I had a couple of ideas that I use that might give you some immediate relief for your skin problems. I want to preface this comment post by stating that I am not a medical professional and I have absolutely no medical training whatsoever. I am an armchair researcher who has spent hundreds of hours and trial and error on my conditions. I am going to condense this as much as possible. When I began to have serious skin issues, I had a 3 day patch test. It revealed I was allergic to a host of things including preservatives, plastics, latex, rubber, etc. Of course, once I was diagnosed, I understood that allergies are my immune system breaking down. I became a voracious label reader and my own food advocate. A very large amount of preservatives include an ingredient made up of benzoates. There are benzoates in almost everything including but not limited to soaps, fragrances, shampoos, toothpaste, household cleansers, tons of food products, prescription and over the counter medications. Even a lot of new clothing is preserved initially with formaldehyde. Now I always wash my new clothing in my allergan free detergent before I wear it. When I went to the grocery, I began to read labels of foods I was preparing and eating. They were filled with artificial flavoring, preservatives, dyes, fillers, etc. I began to eat organic foods and prepare more natural foods and I never buy anything with those things in them and I don't eat most pre-processed foods. I also eat a lot of gluten free foods.I choose my soaps toiletries very carefully. When I eat out, I stay away from saucy foods and red meat which usually has dyes. I carefully research any new medications I am asked to take by my physicians. I use Mayo Clinic website a lot for my research. It is a great source of trusted information. So, I went from bloody infected rashiness all over my body primarily my extremeties, to one small 5 inch in diameter slightly dry red patch on my right leg. Maybe this information can at least help you with your skin problems. A week after I wrote my initial story and posted it, I went into the hospital for six days with diverticulitIs (An unfortunate part of my illnesses). While, in the emergency room waiting to be admitted, I worked with the Doctor to ensure I had the right IV antibiotics so I didn't have problems. The initial antibiotic that is frequently used for this problem, Flagyl, immediately gave me a rash and I began to bleed. We finally found one that I could tolerate. The same with the meds I was sent home with. I asked the nurse what she was giving me everytime she wanted to put something in my IV or in my mouth. It seems like a lot of work but it was very well worth the effort and it became very easy to do once I got used to it. It has truly helped me to have clearer skin. Good Luck to you and please keep me posted. I would love to hear from you.

Jan Trent (@jantrent) · Wed, Aug 27 at 9:36pm CDT · #

Oops. IN tears.

Steveb (@steveb) · Wed, Aug 27 at 10:59pm CDT · #

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..
Steve Bowerman

iggeez (@iggeez1416) · Thu, Aug 28 at 4:35am CDT · #

Steve, What an amazing story. I am so glad you found someone who figured out what the problem was after all that time and you are now feeling better. I hope you continue your road to recovery and feel better everyday. Thanks for sharing with me.

square patterns (@canoli64) · Wed, Aug 27 at 11:50pm CDT · #

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

iggeez (@iggeez1416) · Thu, Aug 28 at 4:40am CDT · #

Hi Mark, I am so sorry to hear about your Mother's passing. It is always difficult to lose a loved one and to see them battle with a disease most of their life. Thankfully researchers now have new medications that don't have such harsh consequences that will hopefully help me to live a long and quality life also. I was on prednisone for 3 years for my skin issues before they knew what was wrong with me and it is a very harsh drug. It seems stress is frequently used as a diagnosis when a disease is evasive and difficult to diagnose. Thank you for your kind and uplifting words.

patti johnston (@pjohnston94) · Thu, Aug 28 at 1:17am CDT · #

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!

iggeez (@iggeez1416) · Thu, Aug 28 at 4:43am CDT · #

Patti, Thank you so much for sharing your story with me and your words of encouragement. This seems to be the case many times with MG. I am glad you also found Mayo Clinic and they could help you as well. They are so great and help so many people. God Bless you also.