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...
I was recently in the hospital for bleeding. My blood was to thin.
I was shocked at the lack of knowledge regarding MG. The meds were not given in a timely manner, the dose was not correct, the hospitalist and nurses had very little knowledge of MG. The final day of my stay they finally got it right. (the meds). It was really a set back. I was unaware that professionals had so little knowledge of our disease. My oncologist and neurologist will be involved next time. I kept asking the staff to call neuro but they never did. My oncologist got involved and that really helped the situation. I will know better next time. I think it was really the unit I was on.
I was shocked at the lack of knowledge regarding MG. The meds were not given in a timely manner, the dose was not correct, the hospitalist and nurses had very little knowledge of MG. The final day of my stay they finally got it right. (the meds). It was really a set back. I was unaware that professionals had so little knowledge of our disease. My oncologist and neurologist will be involved next time. I kept asking the staff to call neuro but they never did. My oncologist got involved and that really helped the situation. I will know better next time. I think it was really the unit I was on.
Autoimmune diseases are weird and MG has to be one of the most puzzling and deceptive. If it were more common or more commonly diagnosed, we could depend more on the medical professionals. We cannot. We have to prepare for the worst and have someone with us who is knowledgeable and prepared for the worst. There are a number of discussions in the links group as well as what to take to the hospital and ER. MGFA has pamphlets which are linked as well.
We do not look as sick as we are. The common ways of diagnosing and treating disease such as antibiotics and oxygen and depending on oxygen sats and utilizing CT scans with contrast are all used in the hospital and ER and may be life threatening. We do well to involve our treating doctors before we are admitted or even transported. We need to take our medications with us.
Hospitals are dangerous places for us and we need to work with our neurologists and PCPs so that we are doing well enough not to need them. MG is treatable, but not everyone in the medical field knows how!!!! b.
Hope you are feeling better.
Similar to you, we were shocked - with the lack of knowledge about MG. Not only the timing of meds, but entirely missing important meds, even though prescribed.
Ellen had to bring in my meds, from home. I took them, according to schedule, as needed. Despite protests from staff. (They had plenty of time, to make sure I wasn't taking meds from home. But no time - to look in my chart & bring prescribed meds. Nurse Ratched mentality - or what?)
The story was different, during other hospital stays - at my primary Neuro's hospital in Boston. With this well-respected autoimmune specialist on duty? Believe it: ALL meds showed up. And ON time too. - Ross
My recent ER visit tho was an eye opener and for my husband. When I can't speak he will need to step up and advocate. One of the biggest problems is triage at the very beginning when they may confuse weakness of breathing with basic shortness of breath like in asthma and take a sat, get a fair reading, and think you are ok. Often with muscle weakness your saturation stays good until you crump. VItal capacities and inspiratory forces are better indications of how you are doing. IT takes someone who understands this and that is usually from the RT dept and the ER doctor. Unfortunately our muscle weakness is rare enough most nursing staff and many doctors have not treated someone with it. Having information in hand goes a long way. It is frustrating for sure and can be dangerous so we have to step up and make sure our needs are known. Marie