NeuroTalk Support Groups - People just do not understand.....

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- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - People just do not understand..... (https://www.neurotalk.org/myasthenia-gravis/85656-people-understand.html)

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!

Brennan is just being modest - he has been through Hell and back - yet he never, ever complains! He is a perfect example of a tough and wonderful person!

It is sad that we really don't have a support group in our family's, but we do have neurotalk.....I don't know what I'd do without it. There has always been here for me when I am feeling sorry for myself or am scared! For that I will always be grateful!

It drives me crazy when people - well meaning people - suggest that I "get some sun" or exercise more". I know they love me, but they still don't GET IT!

It will get better!

Big hugs!
Erin:D

Quote:

Originally Posted by Brennan068 (Post 504736)

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?:(

Quote:

Originally Posted by whirlwind123 (Post 502002)

: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'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.

Quote:

Originally Posted by leaningin (Post 505614)

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.

Hey there! THe only time I had problems with Mestinon was when I was too weak to eat but took the liquid form......it was awful!

Maxwell's mom had problems with it as well, but I think she said she is lactose intolerant...........or something like that.

You need to talk to your neuro/gp about this. You don't need to get dehydrated on top of everything else...

I hope you feel better soon, hon!:D

Big hugs!
ERin

Quote:

Originally Posted by leaningin (Post 505614)

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 calmt and not be able to see. That is what Mestinon does to me. Anyone else had any luck mitigating those side effects?:(

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.

Christy, It is so nice to have each other. All our different personalities, and experiences help so much. I hope you'll jump in and join more often.
We need each Other, only those of us who have it, truly understand the day to day things, and the struggles we endure. I miss beebopping around town, shopping, and just going for a long walk. My body doesn't allow those things very often, but when it does, I soak up every moment of it.
Love Lizzie

Just wanted to say hello and welcome to neurotalk! As you said, it is a great site for us, b/c unless you HAVE our disease, you don't really "get it".....sigh

How long have you had MG? What were your symptoms? Are you on any meds?

I'm still a "newbie" - 1 yr dx'ed - thymectomy 1 yr ago, so I am not trying to be nosy, just curious............

That being said, I know you will meet some really great people here and share some amazing experiences!

Big hugs!
Erin:hug:

Quote:

Originally Posted by Christy (Post 506021)

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,