People just do not understand.....
 

:confused:I was talking to some friends from pittsburgh, and told them about the MG, first one said: Oh., that is such a manageable disease and with the mestonin you will feel wonderful, you don't really have any worries:eek:
The next one said: Oh I bet you are on cloud 9 with the mestonin., the disease now is really nothing to worry about., and since you have mestonin you will feel like you did before you got the disease.

Am I missing something., I tried to explain , well you still can be on medicine and have problems., sometimes with mestonin other medicine is necessary., you can still have bad days., you can still have a crisis., they kind of poo pooed me and changed the subject.

I guess some people don't really understand.

I think this is probably one of the toughest things to deal with, explaining a disease to your friends and family!

There are a lot of people who don't really want to know about what disease you have! They just want things to stay the way they've always been. Some people can't even talk about anything medical. Nor do they understand medical topics.

You know how alcoholics avoid going to a bar so they won't be tempted to drink and how people who are afraid to be fat avoid people who are fat? Those are just two obvious examples but it's the same with healthy people and sick people. Some people avoid "sick" people like the plague! It's all about fear and not about the person who is sick though.

Mestinon helps MG but it does nothing to stop the autoimmune process that is destroying your neuromuscular junction and making you weak! This is an awful example but here goes anyway. What if someone is wrecking your car with a bat? If the police come by and take the guy away temporarily, you feel relief but your car is wrecked. Then the guy comes back again and starts to wreck your car even more. I'm not very creative today or I would think of a better example. Someone else will probably come up with a way for you to describe MG and it's destructive power to people.

And MG gets worse while on Mestinon. I was on 90 mg. of it, round the clock when I had my crisis. Do your friends know that you could stop swallowing or breathing if you do too much? Or are out in hot weather?

MG is a big learning curve for the person having it. Imagine how hard it is to understand if you don't have it! ;)

Just give it some time. My family "got it" after only a short time. One of my friends never did and we are no longer friends. All you can do is try your best to explain it to them.

Hang in there! You are going through a lot right now. Lots to think about.

Annie

I guess some people don't really understand!!
 

Yeah, for me alot of the problem is that if I'm out and about (work or a friends) that means I'm having a GREAT day! People don't see us really bad, cuz we're stuck home on the chair or couch or bed! My voice has really started reflecting the level I'm at lately, more so than the last bout I had, so people have started to catch on that what they see is NOT representative of what I'm dealing with now.

Dottie's right though, many people - especially those that love you - don't want you to have a problem so they go into denial. The link I posted to MGFA on your thread about hospitals knowlege of dealing with MG crisis has lots of brochures. Some you can print out to help family and friends understand what you are dealing with, as well as how to recognize a crisis. Maybe be should carry them around like business cards, huh?

Becky

HEy Becky!
 

Brilliant idea! Brilliant!

Erin

HEy Whirlwind!
 

I have a wonderful understanding family, they are great and supportive.

I still get the "how are you" (from friends etc) I say "not bad", and they reply "oh but you're looking so well"
I always think oh well if I'm looking well I must be musnt I!!!!!!!!!!!!!!! Never mind it took 5 minutes to put my shoes on to come out.
its hard, and doesn't get any easier, but I've learnt to deal with it in my own way.

Yes Lizzie I get that one to from people outside of the family. They think if I got fit and just stopped being lazy I would get better.

My Sister and Brother in law have great senses of humour, and are always ready with a quick word if they see I'm stuggling. If I'm having a hard time walking up a hill they will say "Come on RUN" at which we all break into laughter, its a good way of dealing with a frustrating situation. Many a time my darling big Sister has dissolved into tears wondering why her little sister has this disease.
I also have a wonderful sister in law, who would do anything for me, she is just great!!
So I treasure this, and try to put up with people who Can't understand
Kate

That's cool Kate. My daughter is great for that comic relief to break the discomfort. She knows that what I hate worse than anything is for people to be watching me struggling to walk and having "that look" on their faces. So she does things like gently putting her foot up on my behind like she's kicking me in gear and saying somehthing like "move it granny"! It lightens the mood, which helps me. I don't want pity!

I have found the best way to deal with the suggestion to exercise is to explain how the disease actually works (in laymans terms) to people, followed with "MG is the only disease I can think of that exercise isn't on the list of things you should do". It seems like that has help extended family and friends understand better.

Becky

Thankfully my MG is very (*very*) mild. I've recently started physio therapy to rebuild muscle tone and stamina. Three weeks in and it has been fantastic for me. I think the important thing about exercise and MG is to listen to your body. Push the exercise "just enough" that it is doing you good and not exacerbating the MG.

My physio researched MG before we started and is being quite careful not to let me push it too hard, but is pushing enough that I'm getting better. If your health plan covers physio for conditioning purposes, I highly recommend it.

I agree with all posts above me though, when I'm down and the MG is hitting hard, there's little sympathy from those around me who don't really get it.

Hello Whirlwind!
 

Mestinon is no cake walk!
 

Okay, am I the only one who has horrible side-effects with Mestinon. Basically, I can choose on a daily basis to have decent vision and explosive diaherrea or have a calm gut and not be able to see. That is what Mestinon does to me. Anyone else had any luck mitigating those side effects?:(

I'm lucky in that I have no side effects from my mestinon. Have you tried Immodium? My neuro suggested that should I have any gastro issues when he first prescribed it to me.

Brian.

I can feel a good boost after 20 min. of taking my mestinon, but I also have GI trouble, every morning, they thought it was do to mest. at first, but turns out I have malabsorption going along with a secondary disease, with Neuropathy & myopathy, myotonia. My follow up is tomorrow with Neuro.

Hi Leaningin
 

Hello Everyone,

After reading this forum for 10 months or so, thought I would jump in with my experience. I live alone so I mostly cope in my own way at home. At work, the weakness and symptoms are band-aided up with Mestinon. I do not think people notice when I fumble or drop things. I change routine to accommodate the weakness.
Family, friends and co-workers mostly are interested, yet not involved in the day to day muddle of this unwanted invading monster we live with. I have a few people listen to me when I need to vent. Mostly I pray.

Thanks for all your posts, I have learned oodles of info that is not available on the medical sites.

Hi Christy!
 

MG BIO
June 2008 I began to experience sporadic light episodes of - double vision - slurring of words - trouble swallowing - breathing incorrectly - walking strangely - fumbling.

Went to ER (some family pressure) because I looked as if I had a stroke, although I was confident I had not because I looked well after a short rest. ER sent me home with instructions to see GP.

GP wrote scrip for potassium and suggested I see a neurologist. Three week wait for neurology appointment. Symptoms intensify radically. My computer and I diagnose myself with generalized MG while waiting the coveted appointment.

Textbook work-up including all possible tests took another two weeks. Finally, I received a definite Dx of non-thynomic generalized myasthenia and Rx for Mestinon (180 mg timespan ½ twice a day as needed). In October, I telephone Dr. office, request, and receive Rx for additional Mestinon (60 mg generic tablet ½ to 1 tablet per day as needed).

Most of the emotional issues of this disease have been on hold. Other huge family medical issues make my MG materialize small on quality of life scale. I am now justifiably depressed. (Because of this board, and your kind words to one another, I know I am not crazy just slightly depressed). I will be calling neurologist today for yearly appointment. Hoping there is an antidepressants ( Lexapro, Effexor, Cymbalta, Zoloft) drug that works well with Mestinon.

Those are the FACTS….
Theses are the FEELINGS ….
I have no energy to push through a task - if I do - I pay for 3 days. Food has become an enemy, walking more than a mile seems dim-witted, all responsibilities are much to time sensitive, vacuum cleaners weigh 200 lbs, heat is equivalent to immobilization, I now ignore things that were paramount a year ago. I continually feel alien within my own life, both physically and emotionally. Spiritually doing okay but feeling somewhat reminiscent of Jonah.

Wow, that was therapeutic to write nearly years worth of life changing events into a few paragraphs.

Thanks for reading …Blessings to all.
Christy,

Hi Christy!
 

Hi Christy,

welcome to the board!!

I'm on antidepressants, it helps me get through the tough times.

You say you will be calling your neurologist for your "yearly" appointment, I'm a bit concerned. With all your symptoms I would be hoping your neurologist would be trying to stabilize you a bit more. I know I still struggle with some of these things, but I would have thought you would need to see them a bit more often. Anyway thats just my thoughts.
Yes it does help to put things down in writing, I still come here and pour my heart out, it really does help
Kate

I agree with Kate and Lizzie!
 

Ditto.
 

Christy,
Welcome to our forum!
:I-Agree: One year appointment? Even as I was coming under control with generalized Myasthenia, I saw my neuro at most every 3 months. I didn't graduate to 6 months until it was obvious I was mostly controlled. Does the Mestinon as prescribed for you seem to control your disease? I'm surprised if it does with the symptoms you have described. Have you checked on other neuro's at least to get a second opinion, not on the dx but on your treatment?

I take Effexor ER for depression. It has an added benefit of giving a little energy, too.

I'm so sorry someone else in your family is struggling with severe health issues too. It seems there should be a limit! And emotional stress can be a big contributor to MG.

When my cousin died at a relatively young age of a sudden massive stroke I was lucky enough to already be in the hospital (getting my dx, actually), because I turned into a limp noodle after getting the news.

I wanted to say, you have such a gift for writing. Do you write in your career? If not, you should pursue that I think! Your writing, even just relaying your story, is very poetic.

I hope you'll continue to post. It does help to get some of this off your chest!

Big Hugs! :hug: