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Old 05-04-2012, 01:06 PM
BackwardPawn BackwardPawn is offline
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Join Date: Apr 2011
Posts: 211
10 yr Member
BackwardPawn BackwardPawn is offline
Member
 
Join Date: Apr 2011
Posts: 211
10 yr Member
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Quote:
Originally Posted by Royce View Post
I understand what you are going through.
My (several specialists) Dr's have made me feel like I was loosing my mind. they need to realize that pt's know their bodies best and to listen to them. I was also told there was nothing wrong with me, advised I may be depressed, chronic fatigue syndrome and fibromyalgia were among some of the wrong Dx. Finally after 2 1/2 years I went to a Neuro again for the second time. But this time I went to a teaching hospital. They did a full neuro exam and said one of my thoughts, poss MG ( I have also been thinking MS or ALS). I went for a EMG and SFEMG both came back abnormal and still waiting for AChR and MUSK to come back. What an exhausting journey. And they say stay away from stress. they are the cause of it!! I hope your journey becomes easier and you can find a Dr who really cares and will listen to your concerns. Good luck to you.
Royce
I know how that feels. For a long time I was told nothing was wrong with me. I was even sent to see a psychiatrist. Then finally I was given a diagnosis, only it was the wrong one. I was taking all sorts of nasty, cancer causing meds and they weren't doing much. The sad part was that I was seeing a neurologist regularly and had seen a neuro-opthamologist and neither mentioned myasthenia.

Eventually I just stopped going to the doctor. Fast forward about two years and I got to the point that I couldn't walk, so I see a new neurologist, he looks at my eyes and says, "I know what you have." Then he sends me to have hip surgery (as I hadn't connected the walking issues with MG, yet, knowing nothing about it, yet I have impinged hips). So I stop breathing on the table and when the neurologist hears about it, he's like, "You definately have MG, but I need to do some tests to confirm it." I was like, "Thanks, but did I have to almost die to get a dx."

But then he refused to treat it until I had a thymectomy. I wasn't about to have my chest cut open right after I stopped breathing in surgery. I switched neurologists again and my new neurologist has been overly cautious about surgery, though, and has insisted I put off the thymectomy twice now, as she didn't think I was stable enough. I'd really just like to get it over with, though.
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