I just had my first hospitalization for an exacerbation of Myasthenia Gravis. I was diagnosed about 6 months ago; they think I'd had it about 2 years at that time. I can definitely tell it's worsened.

I missed some IVIG treatments here and there over the past 2 months due to insurance issues. I guess that didn't go over so well. Over the course of the week before my admission, I got progressively weaker and weaker and more short of breath. By the time I got admitted, my pulmonary function test was so bad, during the part that measured muscle strength, I wasn't even able to register on the machine.

They ended up saying I had COPD which seems ridiculous as I haven't smoked in over 25 years. The doc who discharged me said it didn't seem right and sent me home without the inhalers.

They tried to send me to inpatient rehab because I was still so weak, I could not clear PT. On my last day though I was able to walk finally, and my pulse ox went up from 93 to 98 so I said I just wanted to go home.

I got two days of IVIG in the hospital. They said it would take 3-5 days to kick in (my neuro told them that, they called him) and on day 5 after I got it I could finally walk again, more then just to the bathroom with a walker.

I've never been so weak in my entire life. If I used the walker to walk a few steps, my arms would ache for two days after. It was often hard to breathe.

Even at home, my home nurse and home PT still want to send me to inpatient rehab but I think I'm fine.

I wonder, should I be making an appointment with my neuro rather than waiting until my Sept appt? I don't seem to have fully bounced back. I wonder if something like plasmapheresis would help? I can't believe this happened to me and I never want to go through it again. I was in a small community hospital that had no knowledge about MG but personally I think I was one step away from the vent.

I'm going to get a copy of my PFT. I am so much better, but I'm a little concerned that I'm not back to baseline. When PT came today, I realized I am still very weak and again he mentioned going inpatient. I am due for my regular IVIG next Tuesday and Wednesday (in four days.)

I wish my neuro would take my thymus out but he is waiting for this 5 year study to be done before he will take anyone's out. My PCP and my Lyme doc think it should come out.

I just don't ever want to come this close again.

Tracy, I'm sorry you are doing so poorly. YES, you should see your neuro right away. They have emergency appointments, you just have to call first thing in the morning and be VERY assertive.

It's really scary, isn't it? Especially when you don't feel confident with those in a hospital who are supposed to be caring for you! I'm surprised they didn't give you steroids. Is there a reason why not? If only as a temporary fix. Though steroids can temporarily make you worse. A month after I had mine, it did make me look like I'd had a facelift though.

You have to be very careful right now. Do not get overheated at all. Keep everything to a minimum. It would be very easy for you to go into a crisis.

I hope you and your neuro will figure something out to keep you out of harms way. This is nothing to mess with. Hang in there!


Annie