Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 12-18-2023, 12:18 PM #1
Kitt Kitt is offline
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Welcome Benni Someone will be along.
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"It is what it is."
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Old 12-18-2023, 12:59 PM #2
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Welcome Benni Someone will be along.
Thank you. Hoping someone can help with the testing question. Voice is really bad today. I sound like a dang frog.
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"Thanks for this!" says:
Kitt (12-19-2023)
Old 12-18-2023, 03:32 PM #3
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You might find info on testing by searching our site for this forum..
https://www.neurotalk.org/search.php

Try specific words for the search , abbreviated terms won't work
Or skim through the past thread titles for related topics.
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Old 12-18-2023, 06:52 PM #4
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Quote:
Originally Posted by Jomar View Post
You might find info on testing by searching our site for this forum..


Try specific words for the search , abbreviated terms won't work
Or skim through the past thread titles for related topics.
Thank you, Jomar! I'm just not familiar with this forum yet, but promise I'll get more familiar so I don't ask questions that have probably been answered 100 times before.
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Old 12-19-2023, 04:23 AM #5
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Hello. Don’t know where you live but Wolfe Clinics in Iowa Said I had MG. They are a High level Clinic well known in Iowa for developments in Surgery.. If you can get to a Mayo Clinic or Cleveland Clinic that is good. I did not find the testing hard.. Mestinon the drug for Myasthenia really really helps my Vision. Sculptor 44
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Old 12-20-2023, 08:27 PM #6
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Thank you Sculpture44. Unfortunately, I'm no where a Mayo or Cleveland Clinic. I live in the south.

New symptom - I can't yell any more. When I let my dogs out and try to call them to come in, I can't get the words out. To be honest, I'm scared. My livelihood depends upon me being able to talk with clients. How long will go this on for? Reading more on MG. I couldn't find the testing information in the link provided, because it pulls up way too many posts. I don't know what else to search for except for "testing". So I started googling it.

I was hoping this forum would be more helpful and would point me in the right direction. I already have a illness that can kill me at any time (I've been getting DVTs and PEs since I was 17 and have been told that if a large enough clot breaks loose and goes to my heart and lung, I have 10 minutes left and there isn't anything they can do). My mom and her mom died in their 20s from pulmonary embolisms. I've lived with them for a long time and I thought I had coped with all the fears there were with it, but finding simple tasks becoming hard, finding my voice going out, it's brought up all those fears again.

But, I've dealt with the clots alone, I'll get through this too. I appreciate the responses I've gotten so far. I wish nothing but the best to everyone here.
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Old 12-20-2023, 08:41 PM #7
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Hello Benni
There is a Mayo Clinic in Jacksonville, FL and I think there are also networking connections in other SE states, if that may be of help
https://www.mayoclinic.org/locations
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