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MG Crisis Frustrations
An MG crisis is always awful. When I had one many years ago, it was a frightening experience, but my doctors were able to stabilize me.
One of the frustrating things I remember was my neurologist saying he didn’t think I was in a crisis and that I was just experiencing major weakness because I was weaning off of steroids. It was frustrating trying to explain how this weakness was different from my “normal” MG weakness.
What are the things that frustrate you the most when you are having an MG crisis?
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5 Replies
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I found that I got confused and very tired during and after the IVIG.
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My legs get heavy and suddenly I can’t walk, my balance is off and I start tripping on my own feet. When the meds wear off, I always worry about falling and have come close to that at times. Stairs and uphills are always a challenge and swallowing becomes harder. MG and this muscle weakness frustrate me more than I can put into words, it angers me that I had to give up tennis and an active lifestyle.
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People can’t understand the fear of being unable to swallow saliva because swallowing is natural and taken for granted by those who do not have Myasthenia Gravis. I recall the day I was choking and trying to talk but I was slurring. I rushed to my doctor whose surgery was just around the corner. The nurse asked me to wait as the doctor was not in. She couldn’t recognise my symptoms as a cause of concern. The fear I had of dying in the surgery without being attended to was really terrible. Saying that one would get frustrated is more of an understatement. What can I say? Having a crisis and in most situations knowing that getting treatment from competent medical staff is rare, is the most frightening experience we can face.
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The worst thing for me before I was diagnosed with MG was that the ER docs thought I was having anxiety attacks. Which was the furthest thing from the truth. I was anxious because I was having so much trouble trying to breathe.
It was 9 months for me having these breathing issues before I saw a neurologist and was diagnosed with musk positive MG.
I was very blessed to have a wonderful neurologist who had never had a patient with this type of MG. He had to check with other doctors before treating me. I had 4 sessions of plasmapheresis before being treated with Rituxan.
That has been the best treatment for me & my doctor used the same treatment for his second patient with the same type as me.
Medicare paid for all the Rituxan infusions. I only had to pay for the use of the oncology room.
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When I went into crisis years ago, I was initially given a high dose of prednisone. This helped with the breathing, but I kept getting worse in other ways..weaker, then couldn’t swallow – needed a feeding tube. My doc wasn’t doing anything- said the pred will kick in. Even the residents were saying I needed something else. I was finally given plex. 5 treatments didn’t work- they wanted to send me to a nursing home. The respiratory doc pushed for a 6th round over the objections of my neuro..thankfully that did the trick. I was in the hospital for a month. My veins were horrible- the blood would clot before they got enough out to test. The whole thing was a nightmare. I think I have ptsd from it..
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The scariest part is increase in weakness and fatigue, as is slurring of speech. MG specialists are all so far away. When I was first diagnosed a long journey was difficult, it’s impossible now. I have more problems swallowing, breathing, walking, using stairs. A cane isn’t helping, I fall then cannot get up. I’ve tried to find personal assistance and dog, but no response to applications. It’s frustrating that it’s getting worse and no physician knows what to do. A noted neuro in our capitol med school had a specialist but he’s retiring and the wait list is now over two years. Thanks for listening.
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