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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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07-11-2013, 02:34 PM | #31 | ||
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Another question, if you're willing. "...How can I trust someone who is so arrogant that while I was still talking he starting dictating over my voice and dismissed me as his nurses escorted me out of the room. He was obviously finished talking to me because I challenged him because I wanted answers. He wasn't going to investigate any further and was about to dismiss me permanently..." Have you ever had someone accompany you to an appointment with this doctor? |
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07-11-2013, 02:59 PM | #32 | |||
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Not this doctor, but my daughter went with me to the Neurologist that this guy trained and the Neurologist told my daughter (an adult) to shut up. I don't want anyone else to feel humiliated, so I won't have anyone else come with me to this doctor.
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"Thanks for this!" says: | Fortunatos (07-12-2013) |
07-11-2013, 03:32 PM | #33 | |||
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Quandry, I have a suggestion for you. Write a summary of your symptoms and medical history from a patients perspective in chronological order. Reread it and correct it over and over, and take out and personalization of treatment by other doctors. You will need this when you go to Mayo. That way you will not forget anything, the doctor has a hard copy for future treatment reference and you will be able to focus on the more important symptoms. That way when you come back from Mayo, you can use this when you go to your NEW neuro that has no preconceived notions and will be receptive to Mayo's definitive diagnosis.
Don't let them make you play their game or get substandard healthcare. You deserve better than this. Move on to a new doctor who will treat you and your disease professionally. Good Luck, kathie |
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07-11-2013, 04:30 PM | #34 | ||
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Mayo clinic is a good choice. That is where I went to get to the bottom of my imedical problems as well. Do you know what to expect at that clinic?
Also don't let any doctor brush you aside when you have real concerns. being treated like that is not acceptable. You are deserving of courtesy and fair treatment. Write down all your symptoms from the beginning. This will help when you go to see this new doc. at Mayo clinic. He will have a record of your daily issues. I wish you all the best. ginnie |
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"Thanks for this!" says: | Quandry (07-11-2013) |
07-12-2013, 08:09 PM | #35 | ||
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I have read that it does, that some people have abnormalities that show up after the thymus is removed and biopsied, and during MRI it looked "normal". My neuro says seronegative means nothing, the symptoms are what counts.
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"Thanks for this!" says: | cait24 (07-12-2013), southblues (07-13-2013) |
07-12-2013, 08:22 PM | #36 | ||
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Quandry, I applaud you, always always always question. One of my doctors was actually killing me (not on purpose!), I was taking a medication flaring up my mg over and over and over. And I finally (after years) put two and two together and said, wait, this med is putting me in the ER year after year!! And every doc said "no, it is not". Until finally a doc realized I had MG and said, oh yes it is. Always question, believe your body, if I did not believe my own body and advocate for myself I would not be alive right now. It is such a horrible struggle, I wish you the best and I hope you find doctors that do believe and trust what you know about yourself and your health.
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07-19-2013, 10:56 PM | #37 | ||
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Hi Quandary,
I've also been going around in circles for 13 years with trying to get a diagnosis. I'm in Arizona, too. Are you willing to share the name of this neurologist you are unhappy with? I'd like to try to avoid him. |
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07-31-2013, 04:35 PM | #38 | |||
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The pendulum has swung again, but this time back to a diagnosis of MG. The doctor who tried to undiagnose me says it is MG because of the positive Anti ach modulating antibodies. After I presented him with a copy of the positive Anti ach test and a copy of high c reactive protein he pulled away from his former diagnosis of "All in my head." He thinks that I don't need to go to the Mayo clinic after all.
This doctor said that I'm a complicated case, and I told him that I don't mean to be complicated, and he said, "It's not you, the symptoms are complicated." I hope the complication isn't the reason he tried to dismiss me so readily before. |
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07-31-2013, 05:30 PM | #39 | |||
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If we are not crazy when we go to these doctors, they will drive us that way soon........
I hope that you do better now that somebody has decided what is wrong.
__________________
Celeste |
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07-31-2013, 09:10 PM | #40 | ||
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I would think Dr's would be excited about a challenge.. instead it seems most of them just want a black and white answer.. just to be fast and move on.. .frustrating!!
How high was your anti ach modulating ab? Mine was 20 on a scale where 0-20 was normal.. this is after IVIG and when I wasn't too symptomatic.. southblues - seriously.. they make me feel crazy!!! |
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