Jump to content

Anyone On Here With A New Diagnosis Of Myasthenia Gravis Or Had It For A While?

Gar1eth

By + Gar1eth
in The Lounge

This topic is 2427 days old and is no longer open for new replies.  Replies are automatically disabled after two years of inactivity.  Please create a new topic instead of posting here.  

Recommended Posts

Gar1eth Grand Master

+ Gar1eth

Posted
  • Author
Posted
I'm sorry to hear this. My friend's brother-in-law has it and it isn't pretty.

 

 

Thank you for your thoughts.

 

I've known someone who had it-an older friend of my parents. He's dead now. But he died at the age of 81 of most likely old age. I mean I know there can be problems. But really if you have to have a neuromuscular disease, this is probably the one to pick. I'm not happy about it obviously. But there are treatments to help. And when you consider I was thinking I had ALS (amyotrophic lateral sclerosis = Lou Gehrig's Disease), I am so relieved. In fact if you read a few things, some of them state that the name 'gravis' ( serious, grave) is a misnomer. My symptoms are fairly minimal now-enough for me to have scheduled the initial appointment with the neurologist whom I saw two weeks ago-but not really interfering a lot with my life. The medication already seems to be helping. So while totally against the way I normally live my life, I'm trying to keep a somewhat positive spin regarding this.

 

Gman

Link to comment
Share on other sites
sniper Grand Master

+ sniper

Posted
Posted

Good luck. Do think now about your home and accessibility and things like that. You don't want to find yourself racing to find another place under pressure. There are services that can consult with you and help you to make a plan.

I have a sister with MS who basically lived like she was always going to be able to do everything without making any preparations, and when the day came she couldn't walk, her whole family's life was upended and I had to swoop in and try to pick up some of the pieces. And it was, frankly, much more expensive for a much less pleasant outcome than it could have been had they taken some time to get their shit together. Or even talked to me before everything hit the fan.

Link to comment
Share on other sites
Funguy Grand Master

+ Funguy

Posted
Posted

My father had MG and ultimately died from respiratory failure (it attacks the respiratory system muscles) but not until he was 86 and had been diagnosed MANY years earlier.

As a physician he had access to the best and latest treatments of which he made great use. He felt that any treatment, no matter what it's possible success rate, was better than sitting around.

Medication, plasmaphoresis, etc.

He had amazing relief with plasmaphoresis - we always knew after he had a treatment because he was ready to go out on the town.

This was in the late '90s so I am sure things have progressed from there.

 

BTW - this is what Aristotle Onassis died from.

 

The best of luck to you Gman!!!

Link to comment
Share on other sites
Gar1eth Grand Master

+ Gar1eth

Posted
  • Author
Posted
My father had MG and ultimately died from respiratory failure (it attacks the respiratory system muscles) but not until he was 86 and had been diagnosed MANY years earlier.

As a physician he had access to the best and latest treatments of which he made great use. He felt that any treatment, no matter what it's possible success rate, was better than sitting around.

Medication, plasmaphoresis, etc.

He had amazing relief with plasmaphoresis - we always knew after he had a treatment because he was ready to go out on the town.

This was in the late '90s so I am sure things have progressed from there.

 

BTW - this is what Aristotle Onassis died from.

 

The best of luck to you Gman!!!

 

 

I did know about the respiratory problems from all the reading that I've done. I'm hoping it might not happen to me, but who can plan? While it's not Mose's 120 years, I have to think 86 is a reasonable age to reach. My father just died last April at 85. He would have been 86 in August.

 

I don't know that the treatments are any better now than they were for your father, @Funguy. If I were a year younger they might think about removing my thymus. It's controversial at my age unless you have a thymoma. Strangely enough I had a bad chest pain attack about a week ago-prob unrelated to the MG-might be due to esophagitis or a hiatal hernia I have. But they did a chest CT to make sure I wasn't having an aortic dissection. I checked afterwards. No thymoma (thymic tumor) was apparent on the CT.

 

I wonder if diaphragmatic pacers might be an option at some point. I knew someone with Ondine's Curse-for those who don't know what that is- it's an extremely rare disease where the people have no real involuntary urge to breathe-esp while asleep. There can be somewhat different degrees of it. Some can 'forget' to breathe even while awake and pre-occupied with something. But as a rule they stop breathing while asleep. Most have tracheostomies placed as children and are put on mechanical respirators at night. Some are put in modern day iron lungs only at night for which tracheotomies aren't needed. The University of Chicago (I think) has had luck with placing electric pacers in the diaphragm. It's analogous to a cardiac pacer. The pacers are set to cause the diaphragm to contract if it doesn't do it by itself within a certain amount of time.

 

What was the first symptom you noticed that got you to the doctor? It must be scary not knowing the potential impacts. I hope all goes as well as can be
I've probably had some minor symptoms for years. But what got me to go to the doctor was intermittent speech problems. The books say people with MG can have 'breathy' sounding voices. That's not what happened to me at all. Back in late June I had an episode where it sounded as if I were lisping. It felt like my tongue was bigger than usual but didn't look particularly big. I went to the ER. My symptoms were minimal at that point. I knew my tongue felt weird. And I could hear a difference in my speech, but I could also tell that my speech probably wasn't affected enough that strangers could tell unless they knew how I normally sounded. They diagnosed an allergic reaction. I wasn't entirely satisfied by that diagnosis. I had been concerned about a stroke also-although it wasn't that I didn't know how to talk-just that my tongue wasn't working normally.

 

In any case after about a month, the trouble speaking started occurring more frequently although not daily. It seemed to me to happen more often when I spoke a lot as if my tongue were getting tired.

 

All I could think of was that this might be the beginning of ALS or multiple sclerosis-a close almost relative has intermittent relapsing MS -so I know it's not always an automatic death sentence-or something else horrible. I went to my primary care person. She suggested a speech evaluation. I was fine with that. But I pushed for a neurology referral too. The speech referral was 1st. I wasn't symptomatic that day, and she was basically useless except she advised me to video myself when I had an episode. I did and was able to show it to the neurologist. I don't think the video was the clincher. I think my history of intermittent episodes and my physical exam findings ( I had weak eyelids) suggested MG to him. The video may have helped a little bit. But probably more in a confirmatory way. He sent off some blood work to look for both muscle wasting diseases (MG not causing death to muscle cells) and tests for MG. My tests for MG came back positive. The neurologist called me about 8 days after I had seen him to tell me my labs were strongly positive for me having MG.

 

On a historical standpoint-things that I think might have been present that I didn't know how to interpret-for years I've had minor trouble eating large sandwiches or something like steak. My jaw becomes tired and achy. I thought it most likely had to do with my TMJ syndrome that I was diagnosed with years ago. But now I think it was probably early signs of MG. And then going back a few months, I noticed that something felt minorly off when I used a straw. It's nothing major. I can still use one. It's a difficult symptom to describe. I questioned myself on whether I was actually feeling anything real at all. On thinking about it now, what I think is happening is that the seal my mouth/lips make isn't quite as strong as it used to be causing me to have to suck harder

 

Gman

Link to comment
Share on other sites
Funguy Grand Master

+ Funguy

Posted
Posted

You are very lucky that you are observant of your own body.

This also goes to show: if YOU feel something is "off" you should pursue if a satisfactory diagnosis is not given.

 

My dad's first symptom was droopy eyelids which is classic. He did not have a thymoma either.

Link to comment
Share on other sites
rvwnsd Grand Master

rvwnsd

Posted
Posted

Talked to my friend. Seems like her brother in law's issues started as something else and due to the MG ballooned., so it is difficult to tell what is MG and what is heart and so forth. Nonetheless, my thoughts are with you.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Recently Browsing   0 members

    • No registered users viewing this page.

Contact Info:

The Company of Men
5834 C. North Kings Hwy #4343
Alexandria, VA 22303

Email: moderators@companyofmen.org

Help Support Our Site

Our site operates with the support of our members. Make a one-time donation using the buttons below.

$10 $25 $50 $100 $200

Make a recurring donation

Additional Resources

×
×
  • Create New...