Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Muscles & Bones
/ Myasthenia Gravis Support Group

So glad to see so many new folks

flutebell
flutebell

Every time I log in I see more new members. Hurray for those foiks sticking with the changes to support all the new people seeking help. I am currently not able to log back into neurotalk so I'll be hanging out here long term. That being said this post is showing microscopically small while i type on my tablet. Must send another message to the programmer folks.


This is such a wonderful, non-judgemental group with great advice and good listening (reading?) skills. Keep up the good work everyone! This disease is such a difficult one to diagnose that folks visiting hear need all the support we can give.


Have a great weekend everyone. Glad the weather here is getting cooler now that fall is on its way.


Flutebell

Rhanson
Rhanson
As we say in Minnesota, "It could be worse" ;-) The new folks are not familiar with the old interface that we liked better, so aren't bothered. The information and support are what is valuable.
AbegailS
AbegailS
Hi flutebell and Rhanson..... I guess that would be me? I am a new member of MG on DailyStrength. And it is definitely the connection to others that I am so happy to be a part of and value entirely. I have been recently diagnosed with MG on August 25, 2016 which seemed to have been spurred by what looked like pneumonia on July 8, 2016. Things are happening like light speed for me... so it's not always easy to breathe (funny I should say that) and hold myself steady during this phase of my medical diagnosis and discoveries. The apparent condition I have is extreme difficulty in breathing. I seemed to have damaged 3 out of 20 nerves in the muscles surrounding my lungs. I have been a nervous wreck since July 8, 2016 and trying to make sense of things. Most of all, fighting for my voice to be heard. I had to call 911, 4 times since July 8, 2016 and some ER Doctors diagnosed me with Anxiety and sent me away. Not good. I think they were Myasthenic Crisis. Very careless to diagnose someone without any bloodwork or testings done. But.... I managed to display some drama and finally got the doctors attention. I am currently on Mestinon 4 times a day for the last 2 weeks. The first week helped a lot. What a relief! The second week... here I go again with difficulty breathing. I'm still trying to display some drama so the doctors will speed up the test results on finding the acetylcholine levels in my bloodstream.... I'd better stop here. Sorry about that. When I get this nervousness ( which is really new to me), I tend to ramble on. I am humbled by the great supports on this page. You display such wisdom and strength which I am only hoping to have one of these days. Thanks for listening.
AbegailS
AbegailS
P.S. Your mobile site doesn't seem to work for my iPhone. Is that usual?
flutebell
flutebell
Hi Abegail
Thanks for adding your story. I think some of the nervousness or anxiety doctors see in us is because of the difficulty breathing! I hope your Acetycholine receptor test comes back soon. Be sure to head for help if the breathing worsens. An MG crisis is not the best way to get a diagnosis.

I can use the site on my Android phone, not sure about iPhones. There are still technical items on various devices. When I use my phone or desktop to type I can see normal sized type. But when I used my tablet the type was tiny. The site folks are still working out the bugs. You can submit a request to them to let them know if other iPhone users can't access the site. I thought that they had changed the site format to make it easier for mobile use.
Flutebell