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,
Quote:
Originally Posted by leaningin
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.  |