[Anacrusis]

I would say that my experience was:


Emotional and very social! I felt like I´d known the person much longer than I did.

It was strangely empathetic as well whilst I was quite asymptomatic during the meeting and the other person was not,

Yet I felt as though I was reliving/experiencing the symptoms with them in at least 5 different muscle areas!

Also interesting to hear views from a couple of different family members who were also present.....


Anacrusis





Happy New Year!..

[pingpongman]

I really enjoyed my visit with a fellow MG'er. I saw her several times at the infusion center as we were both getting IVIG treatments. I always looked forward to seeing her.
Mike

[Anacrusis]

Originally Posted by pingpongman

I really enjoyed my visit with a fellow MG'er. I saw her several times at the infusion center as we were both getting IVIG treatments. I always looked forward to seeing her.
Mike

Thanks Mike for sharing all your experiences, always, they are so much appreciated

I think I put an awful lot of weight on that one meeting because that was the one single, live sharing of experience with another live human being with a similar profile to mine in the space of 5 years of myasthenic muscle weakness symptoms!

So of course I will never forget it!

Anacrusis

[4-eyes]

I just finished spending 10 days with my BFF with MG. We met online years ago and not only did we find we have MG in common, but lots of other stuff. We are almost like sisters and haven't let a 1700 mile distance come between us. This was the second time she's come to visit me in the last 10 years.

I suggest that if you find someone with whom you really enjoy communicating, make the effort! My firend and I have spent thousands of hours instant messaging over the years and most of the time we never even mention MG, but when we do, we have instant understanding and support.

I've also been friends with a local woman with MG for many years. We actually used to work together at the same office when she was diagnosed in 1986. She was nice to have around during the diagnostic phases, but we differ so much in our approach to the disease that we don't have much in common. However, when we need the support, we are there for one another.

I hope everyone takes the time to try and meet others walking the same path--whether it's in person or online. Use the PM features of this site and get to know one another. It can make a world of difference.

[Alan53]

For me after 2years of struggling and confused as to how to cope with taking the drugs and feeling alone and helpless I moved a few miles in to another county that had MG meetings and went and their was about a dozen members and I would say the most wonderful few hours and I go a few times a year it's magic for me everyone is different and also are cheerful people that's how I've coped
Sadly I've not had that support with the medical side which has been the hardest part of coping with my symptoms I would say meeting others in person is a very important way of dealing with a ever changing MG symptoms.
I'm lucky that in England we have an amazing MG support group also nurses who can advise as well.
Alan

[Anacrusis]

Originally Posted by 4-eyes

We are almost like sisters and haven't let a 1700 mile distance come between us........
My firend and I have spent thousands of hours instant messaging over the years and most of the time we never even mention MG, but when we do, we have instant understanding and support.......
I hope everyone takes the time to try and meet others walking the same path--whether it's in person or online. Use the PM features of this site and get to know one another. It can make a world of difference.

That is truly wonderful (it sounds like my real sister )
And great advice too
We also covered many topics and just launched in there & discussed life stories that somehow rarely even get discussed with other friends.
This was a transatlantic one-off meet - but I´ll surely treasure it for ever

Originally Posted by Alan53

Sadly I've not had that support with the medical side which has been the hardest part of coping with my symptoms I would say meeting others in person is a very important way of dealing with a ever changing MG symptoms.
Alan

So true Alan

In one way for me, immediately recognizing the symptoms of the other person at the meeting also gave me some sort of validation
during 5 years of non-diagnosis, that Yes, it´s either MG or nothing!

[Alan53]

Anacrusis theirs never a nothing with any of your symptoms being a non diagnosed myasthenia doesn't change what you know you have and meeting another fellow MG er keeps you strong
Alan

[jillipoo]

Hi, I'm new here and this is my first post. I was diagnosed in August 2012. Contacted the MG Foundation and was given some contact info for a woman in my town who was willing to talk to me. She was really great -- very forthcoming with information. Hearing about her experience, though, frightened the heck out of me (because I suspect it will be my future...). Spoke with another woman by phone who lives across the country and had a similar experience.

I'm probably too freshly diagnosed to fully appreciate hearing about people's stories. I know what can happen with this disease but I'm still in enough denial to hope that I won't be falling down in the street and/or unable to breathe.

Nevertheless, I really did appreciate the time they took to share their experience with me.

[Maiden8680]

I've yet to meet anyone else who has Myasthenia.. other than talking on here of course