My Myasthenia Gravis Story

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    MY MYASTHENIA GRAVIS STORY           

                                                            By Robert Cribbs                                
self is rare symptom in MG. The doctors said it was stress related or depression.  Also several visits to the ER for chest pains and shortness of breath which was diagnosed as panic attacks. You know something is wrong with you and all the doctors want to do is give you anti-depressants. It’s only when I started to get double vision that I was getting nearer to a diagnosis. The eye doctor was saying eye fatigued which he was close but prescribed tri-focal. That didn’t work so finally my family doctor sent me to a neurologist.

  The neurologist ran several tests and had an ideal of what was happening. He started me on Mestinon which help a little. None of the tests were conclusive but MG does not have a definite test for it. Since I had the double vision and enlarged thymus he suspected Myasthenia Gravis, the first time I had ever heard of it and he recommended having the thymus removed and wanting to send me to Pittsburgh for confirmation on his diagnoses. Also that the Thymectomy would entail of cracking my chest open to remove the thymus and a year to recoup. The neurologist in Pittsburgh confirmed his diagnoses after running a couple of his own tests but the Thymectomy entails of collapsing a lung and going between the ribs orthoscopicly and would be 6 months to recoup that sounded a little better. Off to talk to the surgeon, he tells me those other two methods were old. Now he makes a small incision at the base of the neck and cleans out my chest through there and I would have a week of recovery time.

  After the surgery the double vision went away along with the chest pain. I felt great and my neurologist said that I should be good now and if I have any problems just give him a call. I thought that was it, little did I know I went into remission. I spent several years with no problems and thought life was great. Then a couple of years ago I noticed little muscle twitches and thinks like not being able to use a hammer for a long period of time. I started to get more and more fatigued I hadn’t thought about MG for over 6 years.

  Now I’m back on Mestinon, Prednisone, Imuran and I get IVIG every four weeks. I have to watch what I do anymore since I tired real easy these days. It is almost impossible for me to do manual work anymore like mow my yard or any kind of handyman stuff around my house. Those were the things I enjoy the most. I use to love to go out dancing with my wife, now I’m lucky to be able to finish a slow dance. I even dread going to the mall anymore, I am one of those old men on the benches now and I’m only 47 years old. There are days a do feel good but then make the mistake of over doing it somehow and pay for it by being totally wiped out for days.  

  I am still able to work but not sure for how much longer luckily I have a great employer that is willing to work with me. Pretty much all my energy goes to my job so I can pay my bill and have insurance.  Every day is turning into a fight to get thought the day. Every day I can feel myself getting weaker and weaker. There are days I look normal then there are days I walk funny or my eye lids don’t stay open. The most frustrating thing is people say you look good when on the inside you’re fighting the urge just to say the hell with it and go lay down somewhere because you’re so tired.

 

  Update 04-17-15 I am 52 now, still working, Spend alot of my free time spreading awareness of MG and was asked to join the Board of Directors of the Myasthenia Gravis Assocaition of Western Pennsylvania. They have helped me alot my with MG and was more than willing to give back and to make sure it will be there for others in Pittsburgh for years to come.

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