Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

August 15, 2014

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

By iggeez

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.


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Tags: Lupus, myasthenia gravis, Neurology & Neurosurgery, Patient Stories, Rheumatology

I’m so happy the man finally got an answer to what had been plaguing him for such a long time. I too have problems, & doctors don’t seem to be able to ascertain just what the problem is. My MRI of the lumbar, cervical & brain came back ‘alright’, except for severe narrowing at C5, & some bulging discs, very minor things in the lumbar spine, & just two small foci in the white matter of the brain likely age related. Otherwise, the Neuro could not determine just why I’m having my symptoms. Burning in the feet/legs is onging, yet EMG & nerve conduction is normal, but it is admitted those tests do not check for small fibre neuropathy. I’m finding now that I have sensations going on in my head,& I’m also suffering with GERD. Early today, I could feel pins/needles INSIDE my abdomen, which is causing me concern. For the life of me, I wish I knew what was happening to me. For about 3-4 days/week I feel awful…upset stomach, heachache. Some friends think it’s in my mind…my best friend believes me. I’m almost at the point that if something isn’t done soon, I’ll take drastic measures.
We don’t have a Mayo Clinic here in Canada. Oh how I wish we did. Even if we did, I couldn’t afford to attend. A lot of people outside Canada seem to think we have such a wonderful health care system. I can assure you…we do not.
Keep digging…get answers…I just wish I could accomplish this. Good luck to you all!

COMMENT

I am so glad I found this article. I just saw my doctor yesterday and cried like all my other appointments I’ve been told that my symptoms are in my head as well. Three therapists have told me that my doctors need to do their job. I have eye problems rapid heart rates and muscle weakness and now hearing problems. I was so ready to hear my diagnosis when my doctor told my my ANA was positive but no other indication means no diagnosis. Two years ago I was a thriving 24 year old hair stylist and now there are days when my leg just won’t work I can use a cane but it’s like running an uphill marathon in the mud. My doctor told me to ask my new neurologist to be sent to the Mayo Clinic but I know that is months away. I’m at a breaking point where I don’t know how much longer I can do this. I was given a dose pack of steriods for severe pain in my hip with weakness in the other leg I couldn’t walk at all, I was weakness free for the month that followed it was a gift! I could workout again! And now I have no treatment and keep declining. I pray that there is a good reason people have to endure this suffering. I don’t think it’s to teach us a lesson I think that it’s to see what blessings we do have and to take the time to enjoy the fleeting moments we have with our family and friends.

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COMMENT

Hi!
Reading these stories I’m in the same boat. I have leg swelling (to where it looks like my ankles are broke) face and hand swelling. Extremely exhausted, weight gain, hair loss, GI issues, the list goes on. Almost a year of testing every blood work you can imagen, brain mri, chest ct/X-ray, ultrasound of everything expect liver and kidney, echo, stress echo. All coming back “normal” only thing they found was serverly vitamin d deficient. Been passed around to everytype of specialist who are all intrigued and think they will figure out what’s going on. Then when nothing tell me to stay active, less stress, diet and exercise. I used to run half marathons and go on long bike ridea with my husband, walk our dogs, and go to zumba. Now it’s a struggle to have a Normal day of errands and work (hairstylist) my cardiologist just suggestioned I go to Mayo cuz she’s at a loss after not finding anything herself and she’s my 4th specialist 🙁

COMMENT

Thank you for your comment. Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this website. If you would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511) or visit https://www.mayoclinic.org/appointments.

You might also consider looking into our Mayo Clinic Connect website (http://connect.mayoclinic.org), where you can communicate with others who may have had similar experiences. You can also read Mayo Clinic expert blogs and take part in educational events.

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