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Old 05-08-2010, 06:37 AM #11
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Default Memory Loss

Tyson I am furious after reading this and am so sorry you are having to deal with this horrible disease on your own. I wish we could lock Annie in a room with your uncle and Dr and let her educate them on how this is NOT in your head. I am so angry that they ordered a psych eval!!! This is insane. I can tell you 2 weeks ago when I was so out of it from the meds I thought I was losing it but KNEW it was med related and out of character for me to be so depressed and foggy headed. I am still not back to where I was before all the meds but am certain without a doubt that all the meds were the problem. Within 3 days of stopping cellcept it was like my head started feeling clear again. Ok Tyson there has to be someone who can advocate for you if they won't take you seriously. Does anyone know how he would go about getting an attorney at 17? Do you have a coach, counselor, etc who could help you with this? Tyson DON'T give up. Like Annie said you have the right to refuse anything and you are your best advocate. Since you are living with your aunt and uncle do you have someone who oversees how they care for you such as a court advocate? If so maybe you could talk to them. I believe this borders on abuse....your Uncle's statement "you need to stop this" clearly shows he doesn't get this disease!!! I am so incredibly angry that a 17 year old has no support system or anyone to fight for his rights. This is so insane. Please update us again when you can and try to keep your head up Tyson. I can't imagine how you must feel to be so young and basicly on your own. Just know that we are all here to support you, we understand and know this is NOT in your head!!!
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Old 05-08-2010, 01:19 PM #12
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Tyson,

Ridiculous that someone even suggest it is all in your head. Makes me angry. You have something serious going on now and the last thing you need to do is be evaluated for anxiety. I wish I could help. Take care of yourself.
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Old 05-11-2010, 10:41 AM #13
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I was also told that I was having anxiety attacks, that it was all in my head and that I needed therapy. This was BEFORE my MG dx. I was having chest pains as well. Turns out I had thymoma and because of some other complications, it was causing the pain in my chest. But the ER's solution was to tell me to "breathe in through my nose and out through my mouth and try and relax". It was so humiliating. Stand your ground. You know when something is off and even medically trained personnel may not recognize what is happening to you. When I had my thymectomy, I was the first patient that particular anesthesiology team had done that procedure on at the time. I tend to be a bit defensive about such occurances as having MG can be a lonely thing. Best wishes!!!
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