Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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limpnoodle 08/26/2013

I was on my way to plasmapheresis last Tuesday and was unusually weak. I thought of calling for help, but stubborn me, I knew I would feel better if I could just make it upstairs and onto the bed. I was breathing really hard, but willed myself to keep going. I got to the door and that was it. I couldn't hold my head up, keep my mouth closed and my limbs were useless and could not swallow my own spit. They had to rush me down to the ER, and I got my plasmapheresis there, but I had gone down too far, so they admitted me to hospital afterward. I had to get plasmapheresis Wednesday and Thursday and talked the doctor into letting me out as long as I came in on Friday for another treatment.

I had a very good weekend and was feeling really good on Saturday and Sunday.

This morning I almost had a repeat performance of last week's trip to get plasmapheresis. This time I was smart enough to get a ride up in a wheelchair, but I was very weak, tears running from my eyes and huffing and puffing like crazy. My Red Cross nurse was ready for me and brought me back to life! I feel much better after my treatment. I am trying to get it three times a week so I don't land back in the hospital again.

patmeteor 08/27/2013

How scary! I'm so glad they were able to give you your plasmapheresis in the ER, and very glad that you had a good weekend. I hope (and pray!) that you can get plasmapheresis often enough to feel well more of the time (and not get to a near crisis in between treatments!)

Pat

Tim62 08/27/2013

What a frightening experience. Hope you can get treatment to avoid any more upsets, and hope you feel better every day. Take care.

deleted_user 08/27/2013

I too hope you can keep your symptoms under control and stay out of the hospital.

deleted_user 08/27/2013

I hate going to Emergency and/or the hospital. But last week I went to Emergency a 5:00 am and spent more than five hours being tested and finally on antibiotics because the doctor thought at first I had pneumonia. So I empathize with your feelings about making a more timely decision to get the help only a hospital can give. But I am glad to hear that you are doing better. You're in my thoughts and prayers for better days ahead.

Barbel 08/27/2013

I am so sorry that you had to go to the hospital again. Glad that you have a plan and hope it helps. I will be thinking of you. Barbel

joefnh 08/27/2013

Limpnoodle that sounds frightening, I'm glad it worked out ok and that there was not a repeat of the first time.

That's a good goal....trying to staying out of the hospital.

Take care and best of wishes and prayers

Joe

annkemp 08/27/2013

oh my
I hope you get better soon.

ericavt 08/28/2013

Thank God you're okay!!! I am so sorry you're going through this! I will pray that you get better very soon. Hugs to you!

trinity419 08/28/2013

ER's are definitely no fun...But sometimes very necessary.

I pray your treatments give you the strength you need to remain out of the hospital.

Trinity419

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