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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.


HELPFUL LINKS

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

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

Hi Lauren, I emailed you about this. I hope you received it. Let me know. Thanks

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

Karen,
Thank you for writing your story. I have had lupus for many years, however 6 weeks ago I started have many of the same muscle problems you did.

I’ve literally gone from a sick person who’d learned how to live a semi normal life to a disabled person who can’t walk, talk correctly, work my normal job, driving is difficult and shopping… well let’s just say that doesn’t happen anymore.

Someone saw this article and showed it to me. We immediately took it to my doctor at Mayo and she thought it just might be a possibility.

I’ve had lots of testing and on Friday I was told that it’s my fibromyalgia and I need physical an cognitive therapy. It’s in my head! If anyone can understand my level of frustration and insult, its you.

Thank you again for sharing your story.

Hi Lola, I am so sorry it took me so long to answer your post. I have been in and out of the hospital many times over the past 3 months and I am getting ready for surgery. I know it is so completely frustrating when you want your body to move and it doesn’t want to. A member of my family has Fibromyalgia and it is a very debilitating disease. I hope the therapy helps you. My family member has to be on steroids and that is no fun. Please email me if you want to and let me know how things are going for you. I hope you can find some therapies that work for you and help your motor function. I am dealing with not driving anymore and it is very difficult to do. My life as I knew it ceased and I had to rearrange everything. It is difficult. Good Luck to you and keep me posted.

Hi There, My name is Dan Spelich I came across this post in desperation trying to do research for my sister who has been ill for over 10 yrs. now. She is 36 years old and has been through IT.. From removing a tumor in her brain to back surgery, partial hysterectomy, lithotripsy kidney stones, sinus surgeries multiple pills, etc etc etc….I feel soo bad for her, why she must endure all of this. Things changed soon after pregnancy. hormones etc… doctors tell her its stress, its in her head…she is depressed, is stressed to say the least but its what this disease Whatever it is has done to her….she was a nurse, she lost her job due to the fact she couldn’t perform job duties etc. severe migraines sores on her scalp, fatigue numbness, leg pain”all over”. the list is endless. if anyone reading this could possibly point me in the right direction. I would be soo appreciative. my sister lives in Michigan.. and wasn’t recently DENIED from Mayo clinic..even though she has her own INS. and had a referral from her DR. she yet again has had her hopes shot down…she keeps getting the door shut. I am afraid she is losing all faith n hope. any advice feedback I would love…as her brother I want to do anything I can to help..i live in NJ… Im doing research online etc… and I talk to her and try to uplift…

my email isthanks in advance to anyone who could possibly help me help my sister. ty god bless to everyone

Hi, I have been diagnosed with MG and RA. I had my thymus gland removed that had a benign tumor on it. I am now getting infusions. I also am in Georgia and have thought if things don’t get better with my next infusion of getting referred to the Mayo Clinic. I go on Medicare in a few months and am not sure how that works. Did you go to Florida or Minnesota for help? Thank you for your blog. It’s nice to find this information. Bev P.

Female – 67 yrs. old. I started having breathing problems Sept 2015. After a few weeks I had slurred speech. Went to the ER, no stroke – told me to go to my PC doctor. Made an appt with PC doctor and a cardiologist. The cardiologist is the one that dx me with Myasthenia Gravis. Went to a neurologist at the Methodist Hosp. in the Houston Medical center. After test confirmed the dx, I went as an outpatient (all day) testing to see how to treat me. I will go to Methodist starting this Monday through Thursday for an IVIG infusion. If this treatment works, the doctor will set up a monthly IVIG plan. Went back to my cardiiologist last week, he said I will feel so much better after starting the IVIG. My breathing is my main concern, but my leg muscles and back muscles are weak. I’ve had the druppy eyelids, vision problems, arm and hand weakness, swallowing problems (scary). Have called “First Responders” many times to come get me up off the floor or ground. Looking forward to being able to walk through the house without feeling like I am about to take my last breath.

I’m so sorry! It is a debilitating disease. I had my thymus gland out in February and am getting infusions every 6 months. Had my first 2 in April. Plus was on 60 mg of prednisone. Down to 40 mg and back up again. I’m not sure the surgery or the infusions are working. It’s hard to tell. Hoping you find something that gets you better. We need a cure!

My brother David has been dgx with ALS for a little more than a year. He showed signs of it for close to three years and no Doctor was able to figure out what was wrong, until my sister whom he had been living with kept trying to bring him to each doctor —- finally found a doctor who recognized almost immediately that he had ALS. He has been taking medication that was made available to him only through a medical grant funding from those who have donated to the continuing research for a possible cure. He has slowed down in the progression, but without side affects. My hopes and prayers are that, you can also contact the Doctor for possible cure if you have ALS or any relative suffering for same disease here is their email healthmedlab@gmail.com

I was diagnosed with Fibromyalgia around 6 years ago although I’m certain I have had it much longer than that. I have suffered from sleeplessness, joint stiffness, severe pains, depression and fatigue. My neurologist prescribed duloxetin 40mg daily (Given as 20mg twice daily), although it did relieve some of the pain, I still suffered from joint stiffness and extreme fatigue. Finally, i started on Fibromyalgia herbal formula i ordered from NewLife Herbal Clinic, this herbal formula did the magic! almost immediately i started usage, i started noticing a general reduction of symptoms including the very severe pains and fatigue. 9 weeks into usage, the disease has totally succumbed to this herbal treatment. The whole pains and terrible fatigue has seized and i am now able to function fully well again. (Visit www .newlifeherbalclinic . com ) I’m able to get out of bed in the morning and have more energy to go about my daily activities.

i don’t understand

Hi everyone,

I’d like to share my story, I’ve been in chronic pain all over my for the last two years experiencing back spasms, sciatica, dizzy & passing out, bowel issue’s, severe arthritis, & tendonitis. I went to see my doctor & his aprn, the aprn completely dismissed me when I told her about the spasms, sciatica, & stabbing pain in lower left quadrant of abdomen. She nonchalantly stated “it’s probably a hernia” & walked away, I could read in this woman’s face that she thought I was a drug addict seeking pain medication. I was so upset because I couldn’t understand how medical professionals could completely ignore you & your symptoms & not provide treatment or therapy.

I went to my doctor’s office in pain without an appointment, & he told me to make an appointment for next week, I immediately stated “how am I ever going to be diagnosed?” I supposed to make for next week to tell you I’m pain today? I left the office & standing at the elevator, the Holy Spirit spoke to me & said google a pain management doctor; & I did. I wrote down their information & brought it right back into my doctors office & requested a referral. After one appointment with pain management, I was given 3 possibilities for a diagnosis, first is Lupus, second is firbromyalgia, and third is rheumatoid arthritis.

Pain management doctor apologized for the poor care that I have received, & immediately showed my blood work results, I tested positivie for ANA, which 97% diagnosed with Lupus test positive for, my inflammation number is high & wbc is high. My rbc is low I’ve been anemic my whole life, and yet my doctor continued to say he’s just gonna watch the number’s? I’m extremely disappointed with the lack of care I have received because if the Holy Spirit didn’t speak to me, I may have ended up dead before I should have. Healthcare has failed my Grandmother, her doctor’s told her she had arthritis and she really had bone marrow cancer, healthcare failed my Mother, she didn’t smoke or drink & went to her appointments every 3 months & her doctor couldn’t detect tumors in her liver. And trust her doctor knew all of the medication he was giving her was doing irreparable damage to her body. Because as the body ages the organs slow down & don’t work like they used too. The tumors quickly spread to her colon, I knew that they could take a piece of my liver and regrow my Mother’s but the doctor stated ” because of her age he doesn’t want to do it” my Mother was only 66!! My was given her death sentence on my birthday in july & by november of the same year she passed away.

This is unacceptable!!! I am outraged that people can actually call themselves healthcare professionals when they do nothing to help you with your medical & health issues. I told my Mother’s Oncologist (LOL) if she were your Mother you’d be doing everything you could to save her life but because she’s my Mother you are going to let her die. I know that I have to do something to make a difference & stop this from to anyone else.

Thank you

Hello Karen, My name is Kandee. I’ve been struggling with health issues myself, & I’m having a really hard time getting the doctors to take me seriously. There is a movable lump on the rights side of my face where my temple is. Every doctor that I have came in contact with has acknowledged they can feel it, but claim (with the exception of one doctor) they can’t see anything on any of my MRI’s or CT scans.

Recently a doctor found swollen lymph nodes on the side of my face, behind my ear, & under my chin; all where the movable lump is located. Where the the lump is located, it sits on about 15 or more nerves constantly. The lump constantly moves around, pulls, sits, & pokes countless of my nerves. This is extremely painful. This has made my eye infected, my lip, and coutless rashes on the outside of my neck. I’m in extreme pain at all times.

I just want to know what is wrong with me & how to fix it so I can get back to my life. Like you I took for granted so many simple things, that now no longer seem so simple…..

I have two wonderful small children that need their mother back. To make matters worse I have no family, & my Ex- boyfriend (father to my children) recently walked out on us, took our car, & left us with no money for food or bills. He was an alcoholic throughout our whole relationship, & it only got worse the worse my illness got. He was physically, verbally, & emotionally abusive (to only me never my kids. Regardless, in no way am I saying what he did was right). We are getting by, but to find an answer to my condition would be a miracle.

As sick as I am my kids mean the world to me; so it is up to me now to go back to work so I may care for my children. I know it would be so much easier to do this if I wasn’t so sick & in pain all the time. Caring for two small kids alone is hard enough without being sick. Any info on how you finally convinced your doctor to refer you over to Mayo Clinic, or if you know of a doctor that really actual cares & wants to do some good for others & you can direct me too him/her? I would be very, very, very greatful & so would my children. Thank you for listening.

Kandee.

Hi, Kandee. In most cases, Mayo Clinic doesn’t require a physician referral. You can learn more about appointments at Mayo Clinic at: https://www.mayoclinic.org/appointments.

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