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Aug 15, 2014 · 29 Replies

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

By iggeez @iggeez1416

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, Patient Stories

Steveb likes this
jantrent

Posted by @jantrent, Aug 27, 2014

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.

iggeez1416

Posted by @iggeez1416, Aug 28, 2014

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.

doris52

Posted by @doris52, Oct 13, 2014

I need help for my situation and do not know how to tell my story so that I can handle my situation. I had colon cancer about 16 years ago. The point of radiation was never changed during the time that I lost 30 pounds. I later learned that radiation locations should be reevaluated every loss of 5 pounds. When chemo and radiation treatments were finished, I was taken off of all pain medications and found that I was in terrible pain. I was sent to a pain doctor and he prescribed 20 ml. of oxytocin twice a day. At first this worked, but then
I felt like I was in pain much sooner than I was allowed to take my medication. I was given Neurontin as a breakthrough medicine. This made me feel silly and forgetful. I went to a neurologist who put me on Topamax as a breakthrough

doris52

Posted by @doris52, Oct 13, 2014

and I was in terrible pain. I was sent to a pain dr. and he prescribed 20 ml of oxycodone twice a day. Soon this was not enough and the pain doctor prescribed Neurontin three times a day(300 ml each time). I felt silly and I was forgetful. I went to a Neurologist and he switched me Topamax as a breakthrough med. That worked great, except it depressed me. He added an antidepressant. This has worked great for nearly 16 years. I have tried several times to stop the oxycodone , but I am in pain and I can't seem to tell where my feet and legs are without thinking about them.
I have now been told that I can no longer have the oxyicotin due to new government regulations. In the meantime, I have found out the I can no longer take the Topamax because I have glaucoma . I've been put on the Neurontin again and have been taking it for about a month. I am confused and forgetful again. Can someone please help me with my problem. The oxyicotin is the only thing that I have taken that does not leave me befuddled.

iggeez1416

Posted by @iggeez1416, Oct 13, 2014

Hi Doris, I am so sorry to hear of your troubled medical issues. It sounds like you are on a giant merry go round and can't get proper help. I have contacted one of the many excellent staff members at Mayo Clinic and they are going to get in touch with you for some suggestions. I hope this will help. Take Care and message me to let me know you are alright.

jantrent

Posted by @jantrent, Aug 27, 2014

Oops. IN tears.

steveb

Posted by @steveb, Aug 27, 2014

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

iggeez1416

Posted by @iggeez1416, Aug 28, 2014

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.

canoli64

Posted by @canoli64, Aug 27, 2014

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

iggeez1416

Posted by @iggeez1416, Aug 28, 2014

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.

pjohnston94

Posted by @pjohnston94, Aug 28, 2014

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!

iggeez1416

Posted by @iggeez1416, Aug 28, 2014

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.

lak29

Posted by @lak29, Sep 28, 2014

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!

iggeez1416

Posted by @iggeez1416, Sep 28, 2014

Hi Lauren, I am so sorry she is going through so much and can definitely empathize with her. I will tell you that when I took my blood panels for the entire previous year to Mayo Clinic, the Rhuemetologist there saw things in them that no other Rhuemetologist or specialist was able to interpret. He suspected what it was and then confirmed it with further blood testing on me. He stated that it was a very difficult thing to diagnose if you are not used to seeing it. The Mayo Clinic Team has so much more expertise and exposure to unusual conditions and in my case multiple conditions made my case even more complex. Even after I was diagnosed by Mayo Clinic, two of my doctors in my local medical community did not want to take on such complex issues and I had to find other specialists that were willing to continue treatments and help me with my contiuing care. I cannot stress strongly enough that your sisiter and family do everything you can to get her into Mayo Clinic and see if they can help her. I was truly on my last hope of ever unlocking the mystery of my medical symptoms. Once I finally did take that leap of faith with Mayo Clinic, I cannot explain the true relief and sense of empowerment I felt. Please telll her for me that I am thinking of her and let me know if you are able to get her an appointment. I truly hope she can find some relief. If you check one of the comments I made to a post on my story, there is some information there that might give her some relief with her skin issues. Take Care and thanks for sharing with me.

lak29

Posted by @lak29, Sep 28, 2014

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

lak29

Posted by @lak29, Oct 2, 2014

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

iggeez1416

Posted by @iggeez1416, Oct 3, 2014

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

lak29

Posted by @lak29, Oct 3, 2014

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

lolagirl1224

Posted by @lolagirl1224, Oct 27, 2014

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.

iggeez1416

Posted by @iggeez1416, Nov 7, 2014

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.

dspel

Posted by @dspel, Sep 3, 2015

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

livalot

Posted by @livalot, Wed, Apr 6 at 4:58am CST

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.

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Posted by @frang, Sun, Jun 12 at 4:36pm CST

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.

livalot

Posted by @livalot, Mon, Jun 13 at 1:01pm CST

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!

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