Does anyone have the time/inclination to write their MG story?
 

Hello all! I was hoping that a few of you would be able to write your MG story so I can add it to the MG support group I belong to here in SA.

I realize that we live all over the world, but since so little is actually known about our disease and everyone suffers it in different ways, we can provide information that is truly valuable for others our there who suffer as we do.

I personally found the prospect daunting and really did not want to do it until
I remembered how sick I was when I was finally diagnosed and how many dr's I had to go to to get a proper diagnosis - that is simply unacceptable.

I know there are a lot of sick people out there desperate for answers who would really appreciate any/all input.

I also know it is a lot to ask, but am hoping someone/anyone will agree to do it!:D

A am also making up some bruchures so when someone comes up to me and asks me about my big scar I can provide a little more insight regarding our disease. Your story doesn't have to long and drawn out - a few paragraghs would be great!

I know all of you are very busy, but if you can spare some time, I'd really love to hear your stories!!!

Take care!
Erin Hermes

Hey Erin,
I've been meaning to write about my experiences anyways so if/when I ever get around to doing it I'll send you a copy. I've got some time off coming up so I'll try to get things started then. Because of the huge variety of symptoms and experiences we've all had it would be interesting to read a compilation of our "stories." Oh! I could also ask some of the groups I'm in on facebook to see if anyone else is interested if you wanted me to.
Good luck with it Erin!
~Kathy

Awesome!
 

Kathy,

THank you! Thank you! THank you! It is very much appreciated!

Erin

what a great idea Erin will send you it soon alan:)

Thank you!
 

THanks Alan! I really appreciate it! I know this is going to help a lot pf people!:D

Erin

Hi Erin,

I just found these forums via a post on the Facebook group board. What information are you looking for? My intro post to the Facebook group had the basics of my diagnostic experience - I'd post the url, but the forum won't let me (to new ;) )

I'm still quite new to this whole MG thing but willing to share what I've gone through.

Cheers,

Brian.

Just your story - plain and simple
 

Hey Brian! I am hoping that anyone will be willing to tell their personal MG story - share the whole MG experience with others who do have MG. Your symptoms, date diagnosed, problems with meds, neurologist info - anything that you think will be helpful to those of us with this disease:D........I posted my story on the MG support site here in SA. Hopefully other people in my group will want to do the same.

Since stangers come up to me and ask me about my scar, I am making up some brochures fer those who are actually curious about MG and how it effects us.

Take care!
Erin Hermes:D

MY MG story
 

My story is posted @ www.mgsouthtexas.org

Erin:D

Hi Erin,

Just wanted you to know I had not forgotten this, I'm plugging away at it while in the hospital here. I'll post it to LiveJournal when I have it completed, I'll be posting my recent crisis story there as well as soon as I have an air card for the laptop my brother loaned me.

Brian.

Hello again!
 

:hug:Oh, Brian, I am so sorry to hear about your crisis......What happened? What meds are you on? Do you have a good neuro?Are you on IV IG or plasmaphoresis? Do you have family around to help you cope? I know how scary hospitals can be..........Hang in there:hug:

If you need to reach me, please do so. I'll be looking for your posts...I am available 24/7.

I can't wait to see your story. I know it will touch others and spread MG awareness.......

Take care!
ERin

I'm out of hospital now (finally, almost 3 weeks in quarantine is pretty miserable.)

As mentioned somewhere here, I had radiation therapy for the thymoma that I had. Due to the location, this burned my chest, back, esophagus and lungs. It is a natural and expected side effect of radiation therapy to the upper chest. The problem is I caught a cold during therapy. The burnt lungs collapsed some bronchial tubes and the cold settled in those collapsed areas developing into pneumonia. Pneumonia is a very severe aggravator of MG and I was unable to get nutrition in to fight it off. While in hospital I picked up some MRSA in my lungs which resulted in my quarantine and extended stay. The infectious disease specialist wanted me to get it all out before letting me leave where I had come in with such severe pneumonia.

I have a great neuro, as soon as he saw me he knew what was going on and got the ball rolling to fixing my condition. I didn't even have to tell him anything about what was happening, he asked if I had a cold recently and then went on with various questions that he seemed to already know the answers to, I just needed to confirm. He setup plasmaphoresis right away and that resolved almost all of the MG issues. They just had to deal with the pneumonia and lung damage after that.

I'm on quite a pharmacy of drugs here right now... they upped my mestinon from 60mg x3 to 90. I'm on a short term run of prednisone for the lung damage and a heavy duty antibiotic for the MRSA.

Hi Erin,

My story has now been posted to my livejournal. It is public and the url is brennan068 . livejournal . com (without the spaces obviously). Feel free to glean whatever you think will help anybody else out of it. I've posted both a general "Myasthenia Gravis and me" which tells of my initial experience as well as a very long two part post of my recent crisis.

Cheers,

Brian.