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...
Hi everyone - I hope your MG is behaving itself and you are all doing ok.
I wanted to ask those of you that are having success with your medication and are able to "control" the majority (or hopefully all) of your symptoms if it helped to alleviate the "psychological" effects of this disease.
To explain myself - as you are by now well aware I am still awaiting diagnosis and don't know if I do have MG despite the Dr's acknowledging there really is nothing else it could be. I know I've posted about the way I have reduced my lifestyle,(ie social life, exercise...basically anything other than work and my little girls is pretty much non existent and even those are a struggle most of the time!) and adapted my life to keep the symptoms as low as possible and to be honest - I have been doing this for 9 years with the fluctuating symptoms so almost accept my reduced activity level quite easily - despite the odd bad few days when the frustration sets in!
My main concern is the psychological impact this has had - after the illness started 9 years ago - I really struggled after being told it was "all in my head" and even believed it myself to the point that I didn't believe/trust whatever my body was telling me. So when I would be out on a day out or driving in my car and would begin to feel weaker, or get breathless/chest pressure or my eyes felt as though they were closing etc etc I was convinced that this was all in my head and began to become very panicky which in turn developed into generalized anxiety. I just couldn't trust myself not to be ill when I was out and became scared of embarrassing myself as "it was all in my head" and there was no cause of these symptoms - anxiety was the only answer, I began to become scared of driving my daughters as I thought I would faint as that was how I rationalized the "weak" feelings and generally didn't trust myself to take them out for the day alone in case I became unwell and was unable to walk fast enough to catch them if they ran off etc. I would like to point out that I try medication for anxiety (HUGE mistake, it made me worse - I lasted 4 weeks!) Counselling, Anxiety Workshops, The Linden Method....the list is endless!! I consider myself reasonably intelligent and I completely understand every aspect of anxiety as I have a compulsion to research and do whatever necessary to get better and every "expert" I met commented on how they couldn't understand why my symptoms continued. I am now starting to think it is because I actually WAS feeling unwell and was dismissing my body trying to tell me so!!
I hope I haven't waffled too much there - I'm not good at short stories! I just wondered - if anyone can identify with this and if so (assuming I do get a diagnosis and some medication to help) did the medication and effectively the control of the symptoms help to learn to "trust" your body again and gain your confidence that you are not going to feel ill every time you leave the house for more than an hour!
Thanks again everyone - wishing you all a lovely day :)
I wanted to ask those of you that are having success with your medication and are able to "control" the majority (or hopefully all) of your symptoms if it helped to alleviate the "psychological" effects of this disease.
To explain myself - as you are by now well aware I am still awaiting diagnosis and don't know if I do have MG despite the Dr's acknowledging there really is nothing else it could be. I know I've posted about the way I have reduced my lifestyle,(ie social life, exercise...basically anything other than work and my little girls is pretty much non existent and even those are a struggle most of the time!) and adapted my life to keep the symptoms as low as possible and to be honest - I have been doing this for 9 years with the fluctuating symptoms so almost accept my reduced activity level quite easily - despite the odd bad few days when the frustration sets in!
My main concern is the psychological impact this has had - after the illness started 9 years ago - I really struggled after being told it was "all in my head" and even believed it myself to the point that I didn't believe/trust whatever my body was telling me. So when I would be out on a day out or driving in my car and would begin to feel weaker, or get breathless/chest pressure or my eyes felt as though they were closing etc etc I was convinced that this was all in my head and began to become very panicky which in turn developed into generalized anxiety. I just couldn't trust myself not to be ill when I was out and became scared of embarrassing myself as "it was all in my head" and there was no cause of these symptoms - anxiety was the only answer, I began to become scared of driving my daughters as I thought I would faint as that was how I rationalized the "weak" feelings and generally didn't trust myself to take them out for the day alone in case I became unwell and was unable to walk fast enough to catch them if they ran off etc. I would like to point out that I try medication for anxiety (HUGE mistake, it made me worse - I lasted 4 weeks!) Counselling, Anxiety Workshops, The Linden Method....the list is endless!! I consider myself reasonably intelligent and I completely understand every aspect of anxiety as I have a compulsion to research and do whatever necessary to get better and every "expert" I met commented on how they couldn't understand why my symptoms continued. I am now starting to think it is because I actually WAS feeling unwell and was dismissing my body trying to tell me so!!
I hope I haven't waffled too much there - I'm not good at short stories! I just wondered - if anyone can identify with this and if so (assuming I do get a diagnosis and some medication to help) did the medication and effectively the control of the symptoms help to learn to "trust" your body again and gain your confidence that you are not going to feel ill every time you leave the house for more than an hour!
Thanks again everyone - wishing you all a lovely day :)
This was taken from one study from this website as an example
http://www.biomedcentral.com/1471-2474/5/42
During pregnancy 9 patients (50%) did not change the clinical status compared with before pregnancy, 2 (11%) had improvement and 7 (39%) had worsening of the MG. Pregnancy duration was 37.5 3.0 weeks (range 2941 weeks).
There are many factors that can trigger episodes of weakness in myasthenics, including other illnesses (e.g. viral respiratory infections), drugs that affect the neuromuscular junction, hot weather, pregnancy, and emotional upset. The undiagnosed myasthenic might not connect the various symptoms to one condition. It should be noted that pregnancy can worsten, improve or have no effect on the condition - that is, a woman will not know how pregnancy will affect her condition until she is actually pregnant.
This is from this website:
http://www.myasthenia.org.au/html/symptoms.htm
I agree with Elinora and unsure81 that breathing issues create anxiety because you don't know if you will get enough air, and, in my case, anxiety about having an "attack"in public.