Hi Everyone,

I'm new to the site, so hello! My dad was recently diagnosed with MG and I've been scouring the Internet trying to find as much information as possible about MG. I've been reading this site and I'm SO HAPPY to have found it!

I'm just wondering if anyone else has had a Myasthenic Crises and had to be put on a ventilator to assist with breathing? How was your experience?

Basically my dad's story is that in August he had knee surgery. He recovered, came home and started to get really tired and have trouble breathing at night. We took him to the ER and he was tested and diagnosed with MG.

He's been recovering ever so slowly and beginning to wean off the vent. He has had 2 rounds of plasmapheresis, 1 round was 7 treatments, the second round was 5 treatments. The first round didn't work that well, but the second one was great! He is currently on Prednisone, and beginning to transition to Imuran. He also takes Mestinon, as I'm sure most others do!

I'm so sorry if my post doesn't make sense, or if I just rambled, I'm a newbie I'm just not sure where to start, but want to learn more. Thanks!

Hey! Welcome to the site. It sure is helpful. I've got a question for you. How was your dad diagnosed? If he got diagnosed the same day he went to the er I find that really weird. For usually it takes months-years.

Yet I've had a crisis, and while in my week and a half stay rebuilding enough strength to walk on my own. I was on oxygen my whole time there. Yet is your dad on it at home? I'm not sure how that works.

I'm glad the second round of plasmapheresis went well, I myself have had 14 sessions. I hope the pred. Is working for him, as for some it doesn't.


Glad you found this website!

Welcome to the site, and what a great daughter you are in trying to learn and understand this illness.

I am shocked your dad was DXed so soon, {took years for me} but I am glad he was. I was on Pred and Mestinon and Plasma exchange years ago and thankfully only had to be on a resperator once {for 7 days}

Today I only take mestinon and rest, that is my treatment.

Feel free to ask whatever you need, someone here should have an answer. As you will learn MG effects us all in different ways. Some are severe and others mild, but we all suffer with it.

I hope your father gets adjusted to his meds and treatment and is able to have many strong days.

Hi Joan,

Thanks for the warm welcome! I'm so happy to have found this group.

Yes, it seems as though he was quickly diagnosed, but we are fortunate to live close to a Neuro Hospital in Philadelphia, who did a test on him to confirm the MG. I forget what it is called but I think it was something to stimulate the nerves in his leg, and see the reaction to it. Also, there was a test where they gave him an injection of something and if he was positive for MG, then he would have a few minutes of feeling almost amazing with symptoms being corrected, and then the symptoms would return within 15-20 minutes. It's was amazing to watch.

If you don't mind me asking, when you were on the vent, or at your worst symptoms of MG, what was your dosage of Mestinon? And what is it currently, since it seems like you have it under control? I'm beginning to see that MG effects everyone differently and am just trying to gauge where my dad falls in the mestinon dosage scale. He currently takes one 60 mg tablet every 4 hours.

Hey Dana,

Welcome to the group! I'm sorry to hear you Dad has gone through so much, but it's wonderful he was diagnosed so quickly. The neuro hospital sounds great. I too had plasmapheresis, but only before my thymectomy and it worked well. Because of problems with other meds, I only take mestinon since 01. I can take 60 mg every 4 hours, 3 hrs. if I need it. I adjust my dosage to how I am feeling and what my symptoms are. Sometimes I have terrible side effects and if it works, I'll just rest. Does your Dad have any other symptoms? Not that the breathing issues aren't enough! Sounds like between you and his doctors, he is in excellent hands. Glad you found us and please ask anything at all. We are a very friendly supportive bunch here.

Hugs,
Pat

Hi Pat,

Yes, dad has had a number of the other symptoms. He has had a drooping eye, slurred speech, trouble swallowing, all over muscle weakness and fatigue, at some times not being able not being able to lift his arms. The most pressing symptom has been his breathing, since it was so bad it lead to ventilation. His spirits are good though! I even told him about this site, and he's anxious to get out of the hospital and started reading and learning on his own about MG.

Hi Tyson,

Thanks for the greeting! I've been reading the site and think it's amazing how you've been handling this at such a young age. You have incredible strength, as I've discovered most Myasthenia patients do, regardless of how 'weakened' their body may be or feel.

As for how my dad was diagnosed, no it wasn't in the same day, but it was within 3-5 days. I know you mentioned in another forum that you are fortunate to live near a university triangle near UNC. Similarly we are very fortunate to live in a suburb just 20 minutes outside of Philadelphia. So when my dad had breathing problems, he went to our local hospital to the ICU.

A neuro saw him there and three days later he was transferred to Thomas Jefferson Hospital, which has an absolutely amazing Neuro Hospital and Neuro specific ICU. He was in the Neuro ICU for maybe 3 weeks where he was treated and diagnosed by a team of doctors. While there he had to be put on a ventilator because his breathing became so jeopardized. In addition to the Plasmapheresis, he also had a treatment of IVIG, but the plasma seemed to work the best.

He's not on oxygen at home, and was just diagnosed with this in October 2009, so it's all new to us. We are thinking he may need oxygen or a breathing machine for when he sleeps, not sure though.

I had a hernia operation about 20 years ago .
Before the operation I did not snore .
After the operation I did and then started to suffer from my breathing stopping in the middle of the night.
What drugs were used in his knee operation as some mg patients are the result of drug side effects.
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