Myasthenia Gravis

I've just been diagnosed with the above, and my hospital gave me a couple of bottles of tablets and basically told me to take 3 a day and look at the MG website for further information. All this did was scare the wotsit out of me (which incidentally is a side effect of the tablets !!!). Is there anyone out there who suffers with the same problem, and if so what sort of help can you get.
Thanks

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what is it?

]Myasthenia Gravis is an auto-immune disease which is characterized by fluctuating, sometimes fatal, muscle weakness.
The body's immune system, in the form of antibodies, attacks and damages the nerve signal reception areas on the muscles - causing a breakdown in communication between nerve and muscle; this results in a loss of effectiveness of the muscle.

My Mum was diagnosed with MG some years ago after she kept getting random double vision, they thought the muscles in her face were weakening and unable to synchronise her eyes properly, they stuck her on some tablets which has kept it under control and to be honest, its not really effecting her life at all right now. I'd ask her for more information but shes away with my Dad touring America in a RV for 3 months :thumbsup:

My ex's mum past away due to this 11years ago, unfortunately it was not long before my son was born so they never met. im guessing they have better ways of managing it now? She was a great woman, i never ever realised how serious the condition could be.
rather than looking at some website, didnt the hospital advise you of a support group where you can actually talk to people about rather than reading horror stories on websites?

People pass away every day. Life is terminal. It doesnt mean that you are going to expire tomorrow or any time soon. As your condition has been diagnosed you will be able to get treatment for it. Biggest thing with some of these kinds of conditions is that what you are feeling is not always noticeable to others. It helps if those around you are at least understanding that there may be times when you feel like carp and cannot contribute as much as you may have done previously. A friend of mine had this diagnosed as a secondary condition many years ago. She has had bouts of being really quite poorly but is doing really well right now so it can wax and wane. Dont try to continue with tasks if you are feeling really tired as theres something about these type of conditions that you dont get the sames signs of pushing yourself too much. And if you do it will flatten you.

Hadn't heard of this until today, and the advice above seems good, but I'm a little surprised your doctor/s didn't do more than prescribe medicine and refer you to a website. But hopefully this suggests you have a very mild version of Myasthenia Gravis (although I'm not sure if it is even measured like this). But regardless, surely your doctor/s should do more to make things transparent...? If I were you, I'd go back to the hospital and request another appointment and more info about your condition. GL with it.

Original Poster

chrishill;4357211

My Mum was diagnosed with MG some years ago after she kept getting random … My Mum was diagnosed with MG some years ago after she kept getting random double vision, they thought the muscles in her face were weakening and unable to synchronise her eyes properly, they stuck her on some tablets which has kept it under control and to be honest, its not really effecting her life at all right now. I'd ask her for more information but shes away with my Dad touring America in a RV for 3 months :thumbsup:



Thank you - this is exactly what my problem is, I've been getting double vision on and off for last 6 years (was putting it down to alcohol lol ). Any information gratefully received :thumbsup:

Original Poster

octobergirl;4356971

http://www.myastheniagraviscure.com/this looks interesting and natural



Thank you very much :thumbsup:

Original Poster

shanecr;4357304

My ex's mum past away due to this 11years ago, unfortunately it was not … My ex's mum past away due to this 11years ago, unfortunately it was not long before my son was born so they never met. im guessing they have better ways of managing it now? She was a great woman, i never ever realised how serious the condition could be. rather than looking at some website, didnt the hospital advise you of a support group where you can actually talk to people about rather than reading horror stories on websites?



There is a support group within the MGAUK website which I'm joining but it takes several days for them to process the application :whistling: I just felt I was thrown out the door with a bottle of pills and left to get on with it. Our hospital has a very bad reputation anyway so this just adds to it's hopelessness. :x

Original Poster

WoolyM;4357420

People pass away every day. Life is terminal. It doesnt mean that you are … People pass away every day. Life is terminal. It doesnt mean that you are going to expire tomorrow or any time soon. As your condition has been diagnosed you will be able to get treatment for it. Biggest thing with some of these kinds of conditions is that what you are feeling is not always noticeable to others. It helps if those around you are at least understanding that there may be times when you feel like carp and cannot contribute as much as you may have done previously. A friend of mine had this diagnosed as a secondary condition many years ago. She has had bouts of being really quite poorly but is doing really well right now so it can wax and wane. Dont try to continue with tasks if you are feeling really tired as theres something about these type of conditions that you dont get the sames signs of pushing yourself too much. And if you do it will flatten you.



Thank you for advice, Doctor's have spent the last 6 years blaming my diabetes for the problem (yes I am falling apart lol), I had never heard of MG until Monday so it all came as a bit of a shock. I think I will contact the MGAUK and suggest that the opening line on the website as saying some of the symptoms can be fatal, which as you can understand is when I freaked a bit. But from reading these it seem that I might just have a mild form at the moment, so it gives me time to find out a lot more about it for later life. :thumbsup:

Original Poster

Liddle ol' me;4357529

Hadn't heard of this until today, and the advice above seems good, but … Hadn't heard of this until today, and the advice above seems good, but I'm a little surprised your doctor/s didn't do more than prescribe medicine and refer you to a website. But hopefully this suggests you have a very mild version of Myasthenia Gravis (although I'm not sure if it is even measured like this). But regardless, surely your doctor/s should do more to make things transparent...? If I were you, I'd go back to the hospital and request another appointment and more info about your condition. GL with it.



Yes, I agree, it was not an ideal way for me to be told, and having sort of sat and thought for a while (I was too much in shock leaving the hospital to think straight !!). I'm going to see my own GP and have a chat with him to try and see where I stand. Thank you :thumbsup:
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