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


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Old 12-17-2023, 02:52 PM #1
Benni Benni is offline
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Hi. New to the board, of course. I'm a 58 year old female, who has been having some issues in the last few years. It started with my eyes. I noticed that they would get fatigued real easy and it would become difficult to see the computer screen. It almost seemed like I was squinting and I couldn't figure out why I was squinting all the time. Since I work on the computer (a lot) for my job, this became an issue. I thought that it was perhaps due to not having gotten new eye glasses in awhile, but I didn't have insurance with my previous job. When I finally did get insurance, I was able to get new eye glasses, but noticed that it continued. I got light screens for my computer, but that didn't help any.

A little while later, I noticed how heavy my arm would get when I was styling my hair. I thought it was just due to getting older. I stopped styling my hair. Then I started noticing how gruff my voice would sound, and how weak it would get sometimes, like I'd have to force the last few words out, but my voice would drop in volume and it just sounded breathless. I've had a few episodes of choking on my own saliva, or while eating chocolate, and will accidentally feel like I've inhaled something I'm eating.

One day, my eye got exceptionally bad so I took some selfies and was shocked at how much my eye lid was drooping. And when I forced my eye open, I noticed that my right eye was looking towards my nose, while my left eye was looking at the camera. Cold wash cloths seemed to help decrease the droop. I decided to see my doctor. I'd had a stroke 2 years ago and was afraid that it was related to that.

Doc suspects MG and sent me to an ophthalmologist. The Ophthal. wants to send me to an ocular neurologist, because he still suspects MG even though the labs came back normal. But the ocular neuro isn't covered by my insurance.

My symptoms are weird, because it's worse if I didn't get enough sleep (starts about 10AM), but if I do get enough sleep it may started later in the day. And then there are times when it doesn't happen at all. I've been putting it off to just getting older, but now I'm beginning to wonder if it is MG. I broke a rib a little over a week ago, and my drooping eye and my raspy weak voice started acting up again this week, which got me to thinking about going to a neuro that specializes in MG. I don't need a referral to go.

If I do go, what kind of tests should I expect, since the labs came back negative? Thank you in advance for any help in this.
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Old 12-18-2023, 12:18 PM #2
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Welcome Benni Someone will be along.
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Old 12-18-2023, 12:59 PM #3
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Quote:
Originally Posted by Kitt View Post
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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Old 12-18-2023, 03:32 PM #4
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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 #5
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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 #6
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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 #7
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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 #8
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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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Old 12-21-2023, 10:49 AM #9
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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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Old 12-23-2023, 05:04 PM #10
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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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