May of 2012 I first was diagnosed with ocular MG which progressed to general in a month and I had a crisis with breathing and was in the hospital for a few days. With much more mestinon I was OK and also gradually prednisone put me into a drug based remission.

A year later I was able to taper off of all MG medicines and now for nearly 3 years have been in a remission without drugs. About 15% of people with MG go into drug free remissions of varying lengths. I am hopeful mine will continue.

Good Luck
Russ

That's great rhanson out of curiosity what age.are you ? Just learning how much age ,thyomas,etc make in my case I was in sad shape blaming it other things but always calling neuro when the double vision popped . She was the 1 who after 1 yr eyes occ wacky diagnosed mg.

I was diagnosed in April of 2013 and in the winter of 2013 and spring of 2014 I had 2 minor breathing crisis that put me into the hospital for about 4 days each. Like Rhanson, more Mestinon, Prednisone and Imuran was given.

In early June of 2014 I had a major crisis that put me in the ICU for about a month in a coma, I was in the hospital for about 2 months. After that I had to learn how to walk again and use my hands....short story, I am very lucky to be alive.

A few months after that I began a 5 month course of chemotherapy with Rituxin and Methotrexate to really suppress the immune system hard. After about 6 weeks the change was remarkable. This treatment while on the severe side of things worked.

It's been about a year since the chemo and I would say the MG is close to 80% in remission. Overall the only MG medication I take now are 2 time release Mestinon tablets a day and can often stop those for a few weeks depending on how I am feeling, I am 50 years old....at times though I feel older In the end though I am fortunate to still be here.

Joe

I was diagnosed at age 65 and am now 69. I know drug free remissions are different than cures, but am hopeful MG will stay away the rest of my life. My doctor says "who knows!"
My year of MG was really bad the first 6 months as I tried to adjust to having a chronic disease and getting enough prednisone to take away the symptoms, then another 6 months of trying to figure the least amount of [rednisone I could take and get rid of most of the MG symptoms. I managed to taper to 0 prednisone and 0 mestinon and MG symptoms stayed away for 3 years as of April 2016.


Russ

Joe, was your ICU crisis a MG crisis???

ReillyP yes it was, it was my third episode and by far the worst. I went into respiratory arrest and by the time the EMT's arrived my O2 sats were in the mid to low 70's and I was basically unconscious. The lack of O2 for about 20 minutes caused the brain to swell, hence the month long ICU stay and coma. Between the lack of O2 and my inability to breath on my own made for a particularly bad situation and I relied on mechanical breathing and an induced coma during that month.

Since then my neurologist has made sure I have rescue breathing O2 at home and in my car. It's a standard O2 tank and a pressure breathing mask that can readily assist any failing chest or diaphragm muscles. This is the dangerous bit with MG and the chief cause in fatalities during a crisis.

Joe

How do you know if crisis? I've been having hard time breathing for two weeks...assume I would have kicked by now if crisis?.... usually I am very active and the smallest excursion I am struggling to breathe. They've done Chest X-ray and CT scan. Negative for antibodies but positive Nerve Conductive and have all of MG symptoms.

Kelly all breathing crisis start with a hard time breathing, but fortunately they rarely progress to a true crisis stage. Do you take Mestinon? If so does it help??

The important thing to remember is to be aware that you are having some trouble breathing, if so call your doctor right away to discuss what to do. In most cases a change in meds (Dosage increase etc.) and rest are what works. Don't second guess breathing problems though, even if your blood tests are negative and nerve conduction are positive there is a very good chance MG is the diagnosis.

Just because you have not 'kicked' by now does not mean that there is nothing wrong, having a hard time breathing is not a normal event and needs to be addressed whether it's MG or not.

What meds has your doctor prescribed to help with breathing and MG??

Joe

Thank you joefnh

I am on Mestinon 60mg 4x a day..... helps, especially when I first started taking it....I guess now I am learning I need to keep it in my system and then it doesn't seem as strenuous of a roller coaster...still learning what I can and cannot do...usually work out every day, walk couple miles not problem..... Saturday I just walked leisurely 2 mile trail and couldn't move for 36 hours...so during that time Mestion did not seem to work..... My Dr. has only prescribed Mestionin...

Crisis one year ago. I am at about 90% of baseline today. About all I can advise is when your breathing first starts to deteriorate don't put off contact with your neurologist for even a day.

I was diagnosed with MG in 2013. Initially my symptoms were moderate and controlled with Mestinon. As it tends to do, my MG progressed during the next 2 years. Last September, I experienced a Crisis that put me in ICU for 9 days. Since then, we've changed my medication regimen and have added Cellcept and IVIG every 4-6 weeks. I am just beginning to see the results of Cellcept therapy. I'm still having some bad days, but mostly am back to a normal lifestyle. One of the things I needed to learn was to listen to my body telling me I've reached my limit and need to rest. I am looking forward to reaching therapeutic remission in the near future.

Wayne, can u please expand a bit of a couple of points in ur post. You say "As it tends to do, my MG progressed during the next 2 years" I'm a bit confused ... all other posts I've read say the direction goes the other way, a more positive direction where MG'ers get their own unique, effective treatment regimen in place within 6 - 12 months. This two years you refer to, was it prior to diagnosis and treatment? Or, if it wasn't ... what the heck was going on with ur docs???

Secondly, please tell us more about the crisis that put you in icu for 8 days. Wow!

reillyp, This may help a bit... http://www.myasthenia.org/HealthProfessionals/ClinicalOverviewofMG.aspx ...About Dr. Howard...https://www.med.unc.edu/neurology/about-us/james-f-howard-jr-md ...HG007

Thank you

Wow. Holee smokes! Am I ever glad I asked!! You know folks ... to use the word "crisis" ... and then say so very little about this topic here ... is almost puzzling?? I mean ... geez ... isn't there something proactive we can do instead of simply wait for such a thing. E.g. why don't we all hav that at home oxygen??

Like picture this. I get a breathing difficulty, it's 2 am ... it's a blizzard here in good old Canada ... the car won't start ... family/friends can't get to me .. nor can an ambulance. Now I ask ya ... surely to God .. us MG'ers shud have something at home shudn't we??