I've just survived my first myasthenic crisis. I had a Thymectomy in 2005 and have expressed mostly remission with occassional breakthrough symptoms since then. About a month ago, I got my usual droopy eye, double vision and general weakness. The difference is that this time it progressed. Eventually, I couldn't hold my head up or chew and the entire right side of my face looked like I had had a stroke.

I finally went to the ER and was admitted to the ICU for IVIG. They told me that if I had waited much longer I would have gone into respiratory distress. THe IVIG, steroids and cellcept worked to reverse some of the symptoms. I'm out of the hospital and back at work but my butt is dragging. After about 5 hours at work I just hit a wall.

Two things: My advice to all of you is not to wait as long as I did to get to the ER. When your head and neck muscles weaken - get help. Second, how in the world do you all hold down a full time job with this disease. I REALLY need to know. I am a single woman with no other means of support. I am not eligible for disability because my attacks are intermittent. But I feel like I'm getting on thing ice with my job because I can't fully function.

Also, I am left with about a $10,000 hospital bill from this latest episode as well as very expensive outpatient medications. Do you know of any MG Foundations that help patients with these expences? Really needing a lifeline and I hope y'all can help.

I am so sorry you had a crisis. They are pretty damn scary. And you are right, no one should wait to go to the ER because you don't know how fast you can get worse.

I'm glad they caught things soon enough. What you may not know is that you are not somehow out of the woods right now. You have a greater chance of another crisis if you don't take it easy. I thought I had gotten better four months after mine and had an exacerbation almost as bad as the crisis - just from socializing with family!

You actually could be eligible for disability. Soc. Sec. disability is not defined as being able to work zero hours. It's the fact that you can't consistently work a 40 hour week for a month's time. There was a company in Florida who helped me get my disability but I can't locate them right now. I'll let you know if I find them or if they still exist. They were a nonprofit that helped with the soc. security disability process. A local disability lawyer should be able to give you a free consultation about the whole process, which can actually take 2 - 3 years!

I have one more thing to add about an MG crisis. Call 911. Don't drive yourself or have someone else drive you if you are that bad!

Contact the MDA (Muscular Dystrophy Association) about what they can do to help you! I really don't know what they can do. You can work with the hospital though and sometimes you can even pay much less if they know you don't make much.

Do you have medical insurance? Do you have short-term disability at work? If not, it's worth it to get it NOW. Look into all options insurance-wise.

PLEASE be careful. You are still at risk for getting worse. And we're coming into the hot months.

Annie

I'm so glad you're home. Like Annie said, be really careful! I should talk,
your and Erins description of crisis fits SEVERAL episodes I've had. Sometimes laying on a couch unable to move, speak, blink, and thinking "how can a person possibly be this weak and still be alive???"

So far, I haven't gone to the hospital on any. Frankly, I'm scared to go the hospital closest to my new house - my daughters ex boyfriend was an EMT out here and they all called it Death Valley Hospital (real name-Platte Valley Hospital). I had first hand experience with that when my husband was taken there by ambulance with his very serious head injury. Those nimrods actually took him OFF the backboard and removed the neck brace prior to any scans or xrays! He had two skull fractures and could easily have damaged his neck - it's amazing he didn't considering the locations and severity of his injuries. Anyway, I don't trust them much!

I'm glad you survived it, though! I'm sorry you had to experience that after having been in remission. It's easy to let the guard down - I did.

I strongly encourage you to start the process for Disability now. For one thing, it's better for you financially to do it while you are still employed because your amount is based on earnings (a tip from my aunt). For another, if you apply and are accepted but have been able to return to work long and decide you don't want the disability they have a trial work period and even you are successful they will leave your approval on file for either 5 or 6 years. That way if you lapse back again in that time frame you won't have to do the process all over again.

Best of Luck, and don't think that just because you are out of the hospital you'll be good to go as soon as you get a little strength! I know the pressures from work, but it won't help if you go back and then crash right away!

Love,

So sorry to hear you went through crisis, I have been 3 of them , it takes so long to get back to where you were before. Have you tried getting a ss lawyer, I know a lot of people declined over & over, until they got a lawyer, & it goes right through. Plus the cost of the lawyer gets paid through back owed money from when your disability started.

I agree with getting in touch with a lawyer and sociak security for disability.

You have already been through so much - you don't need ADDITIONAL stress to cause another crisis!

What you NEED is some down time to regroup and recupe - not more junk.

I do know that some hosp have payment plans - we are trying to work onw e out with the Methodist right now.

Hang in there!

Erin

First and for most, I'm so glad you did not go into resp. crisis...that is beyond scary. But I also have to tell you, that being put on a vent, isn't as bad as your imagination can make it. At least from my experience, my imagination was much worse. For some reason I was thinking it would be much more of a violent thing putting it in.
Right now, you're still fragile, and you will need to be careful, because you can go into another crisis, or severe crash.
You need to file ASAP. Ask the MDA to help. There are lawyers out there who will help you.
I'm so sorry you had to have this happen. I know how you feel about home town hospitals not being the best place to be. Mine is also like that. My nerves get to me when I have to go there, because I know, they're known for making serious mistakes.
The hospital my neuro's and specialists are at, is an hour's drive.
Best Wishes
Love Lizzie