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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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With much encouragement from family; friends and new MG friends I blew off my worthless neuro and went to St Anthony's ER in St Pete. I had been getting weaker and weaker with breathing problems at night. My O2 sats were dropping into the low 80's. When I called my neuro office on Friday to report this and ask about my Mayo referral I was told they were working on the referral as fast as they could but it would take 8 or 9 weeks to get in there anyway. I was also told to go to the ER for any further problems.
The ER doc called in the on call neuro,Dr Franklin (associate of Dr Weiss) . He did a though history and exam. He did a tensilon test that was positive and admitted me overnight to do more testing in the morning. He was pretty upset about the treatment(or lack of) I had received so far. He started me on mestinon 60 Mg 4 times a day and prednisone 10 Mg twice a day. What a relief to finally know what is going on with me. Thanks for all the encouragement and suggestions. This forum is awesome ![]() Sandy |
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#2 | |||
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Member
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Wahoo!!! I'm happy for you. Now the long hard part comes. One piece of advise "LISTEN TO YOUR BODY"
Mike |
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"Thanks for this!" says: | AnnieB3 (05-05-2013) |
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#3 | ||
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Grand Magnate
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What a great thing you did!!! I'm so happy for you.
Franklin is just as good as Weiss. I'm so glad you got to see him. These guys are no-nonsense in their approach. The 80's? You were technically in a crisis then. I hope that you get Dr. Franklin's notes sent to your (former?) neuro and let him know how bad you were. Perhaps he was just out of his comfort zone. If he's nice, though he was ineffective, you might consider staying with him. Or maybe Dr. Franklin can give you a referral to someone in your area. You're very lucky you didn't get much worse. I'd like to swear. ![]() Monitor any side effects of the Pred, stay away from salt and know that it can make you temporarily weaker before it makes you stronger. Why can't all doctors be as awesome as that group of neurologists? You just take care of yourself and rest. What a great assertive patient move! ![]() Annie |
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#4 | ||
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Junior Member
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Sandy,
I'm so glad to hear that you have some answers. What a relief that must be for you! Though you'll likely experience ups and downs in your journey, I hope that you start feeling better soon. ![]() Cate |
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