Hi
I have only just found out about this forum which is a shame.
I was diagnosed with mnd in Feb this year - my first symptoms were in early 2016 - so it's been an awful long time waiting and wondering, with my mobility getting progressively worse...but being told they could find nothing wrong (I even had an extensive nerve test which I was told ruled out mnd).
It was a triple whammy as I lost my husband a year ago to hospital acquired covid, the 'guessed at' diagnosis by previous drs of a stomach ulcer (which had only worsened during 15 months medication), turned out to be kidney cancer large enough that my kidney now had to be removed. After the op I couldn't maintain my breathing in recovery and kept going unconscious, so woke up to find myself on a ventilator. Scary stuff. Two weeks later whilst still in hospital I was bluntly told I had mnd. How much more can one take?
I thought it was a relief at the time to finally find out, but now I am not so sure - I was suddenly a disease and not a person and all I heard was negative. Before I had hope and now I was being told there was none.
Like others I have read on here, I researched and asked many questions and was astounded that so little has progressed from when Stephen Hawking was first diagnosed. There is little (riluzole) for the here and now, it's all in the future....
Thinking about having to come up with a username, I remembered finding this:
If you describe a person or organization as a Cinderella, you mean that they receive very little attention and that they deserve to receive more.
And that is how I view mnd, hence the name.
But I want to end this first post on a happy note - I'm pretty much ok with this now (most of the time), able to enjoy eating again so go out for meals as often as I can, have surprisingly become a 'gamer' playing the nintendo switch far too much and even though I am the most 'disabled' guest at certain holiday hotels that are for adults only, as long as I have a roll-in shower, I can have a really good time!
I have only just found out about this forum which is a shame.
I was diagnosed with mnd in Feb this year - my first symptoms were in early 2016 - so it's been an awful long time waiting and wondering, with my mobility getting progressively worse...but being told they could find nothing wrong (I even had an extensive nerve test which I was told ruled out mnd).
It was a triple whammy as I lost my husband a year ago to hospital acquired covid, the 'guessed at' diagnosis by previous drs of a stomach ulcer (which had only worsened during 15 months medication), turned out to be kidney cancer large enough that my kidney now had to be removed. After the op I couldn't maintain my breathing in recovery and kept going unconscious, so woke up to find myself on a ventilator. Scary stuff. Two weeks later whilst still in hospital I was bluntly told I had mnd. How much more can one take?
I thought it was a relief at the time to finally find out, but now I am not so sure - I was suddenly a disease and not a person and all I heard was negative. Before I had hope and now I was being told there was none.
Like others I have read on here, I researched and asked many questions and was astounded that so little has progressed from when Stephen Hawking was first diagnosed. There is little (riluzole) for the here and now, it's all in the future....
Thinking about having to come up with a username, I remembered finding this:
If you describe a person or organization as a Cinderella, you mean that they receive very little attention and that they deserve to receive more.
And that is how I view mnd, hence the name.
But I want to end this first post on a happy note - I'm pretty much ok with this now (most of the time), able to enjoy eating again so go out for meals as often as I can, have surprisingly become a 'gamer' playing the nintendo switch far too much and even though I am the most 'disabled' guest at certain holiday hotels that are for adults only, as long as I have a roll-in shower, I can have a really good time!
narrowly missing my artery).
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