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 just wanted to share the observation I have made since joining this group and reading everyone's posts. I have said before how sad it makes me to read the struggles some of you have had with just being taken seriously- let alone actually getting a diagnosis! As you all know - I too, have struggled here.
However, from the limited insights into your lives I have found you all in your own ways to be active, motivated, hard working and doing everything in your power to retain your independence and dignity.
Why can't the Dr's see this? I understand that their consultations can be brief but surely it is logical and perfectly understandable for someone to be anxious and worried about their health with their distressing and worrying symptoms, especially when there are no answers and explanations?! Why are they so quick to label with psychological disorders when they a) have not exhausted all other possibilities and b) frequently acknowledge that there is still so much they don't know!
I understand that there are cases where psychological illness can be the cause of physical symptoms, the brain is a complex and powerful organ! There is absolutely no shame in psychological illness whatsoever so why do Dr's write someone off at that point? Not even interested in treating their symptoms beyond anti-depressants?? And furthermore, as I have read on some posts -not interested in carrying out any further investigations as it seems based on the fact that once psychological illness is on your records it must be the cause of every problem you subsequently have?!
I have never found anyone here to be looking for anything other than their life back - to work, to care for and support your families, to be independent, to exercise and take care of yourselves, to just have the opportunity to enjoy even just a few of the activities you once did! I see no one looking for an excuse to stay in bed all day long and not work? I see no one wanting to surrender their family roles and responsibilities? I see no one wanting to give up and shut the world away? And I certainly see no one enjoying any part of the "attention" this illness or the frequent Dr's visits bring them, no one is looking to be fussed over - we just want to quietly get on with our lives, to be "normal" (and if you're anything like me - never see a bloody Dr again!)
I know we all have our bad days but I have to say, despite everything, we all come back fighting - and I for one, am proud to be one of you and part of this group x
However, from the limited insights into your lives I have found you all in your own ways to be active, motivated, hard working and doing everything in your power to retain your independence and dignity.
Why can't the Dr's see this? I understand that their consultations can be brief but surely it is logical and perfectly understandable for someone to be anxious and worried about their health with their distressing and worrying symptoms, especially when there are no answers and explanations?! Why are they so quick to label with psychological disorders when they a) have not exhausted all other possibilities and b) frequently acknowledge that there is still so much they don't know!
I understand that there are cases where psychological illness can be the cause of physical symptoms, the brain is a complex and powerful organ! There is absolutely no shame in psychological illness whatsoever so why do Dr's write someone off at that point? Not even interested in treating their symptoms beyond anti-depressants?? And furthermore, as I have read on some posts -not interested in carrying out any further investigations as it seems based on the fact that once psychological illness is on your records it must be the cause of every problem you subsequently have?!
I have never found anyone here to be looking for anything other than their life back - to work, to care for and support your families, to be independent, to exercise and take care of yourselves, to just have the opportunity to enjoy even just a few of the activities you once did! I see no one looking for an excuse to stay in bed all day long and not work? I see no one wanting to surrender their family roles and responsibilities? I see no one wanting to give up and shut the world away? And I certainly see no one enjoying any part of the "attention" this illness or the frequent Dr's visits bring them, no one is looking to be fussed over - we just want to quietly get on with our lives, to be "normal" (and if you're anything like me - never see a bloody Dr again!)
I know we all have our bad days but I have to say, despite everything, we all come back fighting - and I for one, am proud to be one of you and part of this group x
It's like when I was in the hospital not breathing and they were trying to figure me out, this doc (who was wonderful, btw) only asked once at the beginning if I would want to try antidepressants (he remarked how lovely they are and have come a long way with side effects). I looked up at him and in between gasping breaths asked if people who are depressed have trouble breathing and can't get their legs to work to get them to the potty. He smiled a little and never brought it up again. You know what, help me breathe, then talk to me a bit, and please only bring up something like that if I've voiced a concern of my own or keep saying worrying depressive things. Or study alternative reasons someone's eyes and mouth might not be upturned. Or, or, or.
Just have to laugh at the "attention" factor. In all my gazing at MG stories, forums, etc., not once have I seen anyone who loves attention. Even solidly diagnosed, this is the most attentionless disease or condition. Undiagnosed? No attention seeker would keep telling people their body is doing such insane things, only to be repeatedly put down.
I gave up a decade ago and turned into a hermit just because of a string of doctors like that. One told me maybe they'd never figure it out and I should just try and live with it. One made me want to jump out of the car on the way home (first and only time I ever felt anything like that in my life!). I learned to subsist, and at times got so much better I tried to go back to school, work, only for my body to crash again. MG stole all my strength to fight anything -- when my symptoms are minimal I am so vocal and so strong willed, when my symptoms flare I can't lift my boxing gloves and become meek.
Seriously, how many patients do these doctors see that come in saying they can't walk, talk, or breathe, and a million times out of a million it's just depression?
Now, if you'll excuse me I have to go back to bed. Didn't sleep last night because my pill kept wearing off. Didn't sleep this morning because my dog kept waking me up every half hour. Rested so much my breathing is good now, but I feel like a pack of minions is hanging off my face, piled on my shoulders, pushing my head down, and for the most part trying to drag me to the center of the earth. Oh dear, maybe I am just crazy ;P
Really just wanted to toss a giant heart up here :)
People do things for reasons...their behavior...conscious or unconscious...occurs for a reason. Early childhood trauma and the need for affection and affirmation are things that are built into the person and they do, indeed, need attention and care. They are yet to find the ways they need to be able to feed themselves emotionally and self reflect their own inner state of being.
In the earliest days of our lives, our only social interaction and learning modeling came from our caretakers. If you looked into a mirror and saw nobody there, you would be quickly concerned. Likewise, an infant, without loving reflection will instinctually become concerned...all the way to existential terror. This leaves a trauma in the mind of the child. The fear of "not existing" is paramount and the struggle is on to cry out for that reflection of their identity.
The imprint is deep. If you take an infant from the Western Sahara and raise them in a white household in Britain, low and behold, they will speak with an English accent. How is that?? Imprinting and modeling.
People find, in their early lives, their base identity.
Why do we do that? Because we are scared it will happen to us. If we can find some reason to blame the patient, then we are relieved.
So, when a doctor, who is of course human and subject to just as many foibles, mis-perceptions and flaws as the rest of us, has difficulty diagnosing us, it is too easy to blame us for our problems rather than admit being stumped.
My undiagnosed MG was that way. My doctor knew that if I would just (make a list of any 5 things we could do better), then I would be fine and so it was my fault.
Which, of course was ridiculous, as I had undiagnosed MG that caused the problems. The doctors added blame, pushed me to believe I really was at fault, a quite depressing.
However, underneath it all, I was pretty sure there was something wrong--heart, lungs or something that had taken over my life and made it impossible to live normally. Eventually even the doctors realized that when, to my relief, I was MG antibody positive--so no one could dispute this at all !!!!!!
If my doctors had actually seen a few more MG patients, read more; remembered more from their training, or ran a few more tests, I wouldn't have had at least 3 bad years leading up to diagnosis. I choose to blame myself as much as the docs, for if I had actually taken the time and effort to evaluated my own symptoms, I may have figured it out on my own. When I finally got double vision and ptosis, before I went to the eye doctor who said MG, I did the research and narrowed it down to 3 possibilities of which the worst was MG (was at first thinking it was my 3rd recurrence of Bell's Palsy with additional problems).
And so, why in the world would I give over my health care to doctors who have already failed me repeatedly without taking as much of a role as possible myself in understanding, evaluating, and planning my own care.
My wife tells me I have to improve my diet - but I can barely swallow anything. She has studied and has certificates in nutrition. My sister tells me to take supplements. She sells supplements. My dad wants me to try venom - he is over 80 and grasping for straws for me. Sometimes he cracks me up - he told me to take up bee-keeping in hopes that I would get stung and cured. There is research into other venom though.
In a way, my wife and my sister are implying that it is my fault, even though I am serum positive. I gave up milk and it didn't fix it. I gave up gluten, not by choice but because I didn't want to waste my energy eating it (bread etc). I need something stronger than supplements too.
I think our best hope is targeted immune suppressants. John Hopkin's had some recent research. This could also help RA patients, among others.
The bottom line - my grandfather's brother had MG. So maybe we can all blame our ancient ancestors who passed it down the line to us.
I wonder if there is a way we can do something positive to educate our doctors about how we feel, as a group? Does that type of thing make sense? I had asked my neurologist, an MG specialist, if there was a support group for MG patients, and he said NO. Odd, you would think that they would know about wonderful sites like this and encourage us to use them.
I am not sure why some of us are getting the treatment that we need and some are not. I think I read somewhere that people are fighting to get IVIG. Those of you who were denied it when you requested, were you in crisis? My guy tried to plant his feet in the ground when I first asked about it, but at that point my symptoms were only ocular. Over the next couple weeks my speech was slurring and I had trouble holding my neck up. All of a sudden, IVIG was on the table.
Of course we are all going to have anxiety when faced with all of this!!!
Had some sort of revelation I wanted to add, but it disappeared during my snoozing today.
Honestly, I don't even like posting here or anywhere about what I go through because if doctors have been so judgemental what can I expect from the Internet: House of Trolls (new horror flick, must see!). Even thought everyone here is so awesomely welcoming, I still always hesitate to post because I don't want to look like an attention seeker. I just need help figuring things out, help coping. Nobody in my world understands, except for my mother because she keeps seeing what happens to me every day. And still she doesn't know what it's like to be in this body.
I never had strength about this until I saw other people struggling with the same thing, I'm still learning from everyone. Most especially everyone here. This place is very different. Or MGers are very different. I'm glad either way :)
I need more sleep, I'm rambling away lol, sorry.
If too much Mestinon causes MG like symptoms, how about if all the doctors take it and see how they feel ;P
For the benefit of newcomers I was diagnosed by the 1st neuro with --his words to me'you have a deep conflict in your subconscious you are not aware of and you may never get better'In his report he said I have superwoman syndrome.
Lorraine
Docs play to their own specialties. If you see a surgeon, you're likely to get surgery...and so on.