My name is Gemma and I was recently diagnosed with MND on the 10 June 2016. I am only 29 years old.
I started to notice my speech was slurred, sounded quite nasal and that I was having to think more to get words to come out of my mouth when speaking. This was about eight months ago. I went to the GP and she referred me to a speech therapist. I then noticed earlier this year that I was finding it hard to run (I was a keen runner and gym goer up until autumn last year) and now find it difficult to walk at times because my legs stiffen up, especially on the right side. I have good days and bad days with my speech and walking. I've had one trip on concrete so far (and hopefully no more!) that resulted in a badly bruised chin and sore, cut knees. After a holiday in March this year I went back to my GP who referred me for a CT scan (came back clear), bloods (all came back normal) and then EMG tests, with a referral to a neurologist at Addenbrooke's. I know the EMG test raised a few concerns with the neurologist and I have seen three different consultants now and all diagnosed it as MND. I have had my final test, an MRI today and my consultant said he expects that to come back normal.
I also suffer from emotional labiality and get tired easily. Just these past two weeks I have been waking up in the night because the side I sleep on goes a bit numb, so I have to turn.
It's so strange. Up until last year I was so fit and healthy and active. I knew when things started I didn't feel right in myself. I am starting my voice banking this week (had email confirmation a few days ago that my voice is good for recording).
Going to give Riluzole a go.
Any advice that you may have regarding the early stage of MND would be greatly appreciated. It's all very overwhelming, especially for me to have been diagnosed at such a young age. I've already started with my fundraising and awareness raising
I started to notice my speech was slurred, sounded quite nasal and that I was having to think more to get words to come out of my mouth when speaking. This was about eight months ago. I went to the GP and she referred me to a speech therapist. I then noticed earlier this year that I was finding it hard to run (I was a keen runner and gym goer up until autumn last year) and now find it difficult to walk at times because my legs stiffen up, especially on the right side. I have good days and bad days with my speech and walking. I've had one trip on concrete so far (and hopefully no more!) that resulted in a badly bruised chin and sore, cut knees. After a holiday in March this year I went back to my GP who referred me for a CT scan (came back clear), bloods (all came back normal) and then EMG tests, with a referral to a neurologist at Addenbrooke's. I know the EMG test raised a few concerns with the neurologist and I have seen three different consultants now and all diagnosed it as MND. I have had my final test, an MRI today and my consultant said he expects that to come back normal.
I also suffer from emotional labiality and get tired easily. Just these past two weeks I have been waking up in the night because the side I sleep on goes a bit numb, so I have to turn.
It's so strange. Up until last year I was so fit and healthy and active. I knew when things started I didn't feel right in myself. I am starting my voice banking this week (had email confirmation a few days ago that my voice is good for recording).
Going to give Riluzole a go.
Any advice that you may have regarding the early stage of MND would be greatly appreciated. It's all very overwhelming, especially for me to have been diagnosed at such a young age. I've already started with my fundraising and awareness raising
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