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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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New Member
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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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#2 | ||
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Member
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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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#3 | ||
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New Member
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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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#4 | |||
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Administrator
Community Support Team
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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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#5 | |||
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Senior Member
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Hello, Benni,
I'm sorry you've been having these troublesome symptoms. I hope that you can find a competent neurologist. I found this about the diagnosis process for MG: Myasthenia gravis - Diagnosis - NHS I noticed in the article that those labs that came back normal might be redone. I hope you can find some helpful answers soon.
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Repeal the law of gravity! MS diagnosed 1980. Type 2 diabetes, osteoarthritis, osteopenia. Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, 12/16/20 - 3/16/24 |
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#6 | ||
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Member
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Hi So glad you shared about no YELLING!!!! First Pulmonologist I saw was 2005 when I Began to LOSE my VOICE. I loved to sing to the radio in my car. I love music! One day I started to Sing and I only got out a first phrase before my Voice failed. It wasn’t until 2017 that My GP referred me for voice testing because I was having trouble being understood on the Phone. The Evaluation by testing was it was either MS or MG and the therapy differs so they sent me to ENT. He immediately said you have Myasthenia Gravis. He said who is you Neurologist……you need better drugs! My neurologist ignored all this.. I have a very poor neurologist. Sculptor 44. Oh but my Family Doc got me referred to State Agency that offers Technology for speech issues.
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