Danijela
Senior member
- Joined
- Dec 3, 2008
- Messages
- 667
- Reason
- PALS
- Diagnosis
- 11/2008
- Country
- UK
- State
- UK
- City
- Bolton
Hello to all.
I have been meaning to write for some time, but with the two month old baby there is never enough time. Quick recap - my partner started with first symptoms 2 years and 3 months ago, weakness and extreme atrophy of his left hand and then forearm. He was diagnosed relatively quickly, due to mixture of upper and lower symptoms, dirty EMG, exclusion of other causes etc. - the usual. We attend and MND clinic about 4 times a year.
Two years on his left hand is pretty useless, and he has weakness in his right hand, but atrophy seems to be happening at a slower pace. He thinks there is something happening with his right leg too, but physio and neuro are not sure if it is a result of an old injury or MND related. Breathing, speech, swallowing still all fine. He is still working full time, which is very important to him.
Last week we went to MND clinic for usual quarterly tests. Neuro reviewed all the notes, and concluded that my partner's progression has been fairly gradual and slow. He has no doubt that we are dealing with a form of MND, but encouraged us by saying that Laurence was at the slower end of the spectrum that is MND. He asked if L wanted to repeat EMGs, which L declined as he is confident that the diagnosis is correct. He also said that he recalls seing L for the first time, and that there was no way of predicting the progression (I insisted back then) hence he is quite pleased that L is relatively stable.
I guess I am writing this as an encouragement for newly diagnosed - we did not know how this was going to pan out- weeks, months or years. It looks like years, for which we are extremely grateful. Also, after the initial shock we decided to simply carry on with our lives - we travelled, I completed my PhD, we now have a beautiful son...And while I still don't think one can beat MND (in a sense of being cured) I guess in our own way we chipped away at its armour.
Dani
I have been meaning to write for some time, but with the two month old baby there is never enough time. Quick recap - my partner started with first symptoms 2 years and 3 months ago, weakness and extreme atrophy of his left hand and then forearm. He was diagnosed relatively quickly, due to mixture of upper and lower symptoms, dirty EMG, exclusion of other causes etc. - the usual. We attend and MND clinic about 4 times a year.
Two years on his left hand is pretty useless, and he has weakness in his right hand, but atrophy seems to be happening at a slower pace. He thinks there is something happening with his right leg too, but physio and neuro are not sure if it is a result of an old injury or MND related. Breathing, speech, swallowing still all fine. He is still working full time, which is very important to him.
Last week we went to MND clinic for usual quarterly tests. Neuro reviewed all the notes, and concluded that my partner's progression has been fairly gradual and slow. He has no doubt that we are dealing with a form of MND, but encouraged us by saying that Laurence was at the slower end of the spectrum that is MND. He asked if L wanted to repeat EMGs, which L declined as he is confident that the diagnosis is correct. He also said that he recalls seing L for the first time, and that there was no way of predicting the progression (I insisted back then) hence he is quite pleased that L is relatively stable.
I guess I am writing this as an encouragement for newly diagnosed - we did not know how this was going to pan out- weeks, months or years. It looks like years, for which we are extremely grateful. Also, after the initial shock we decided to simply carry on with our lives - we travelled, I completed my PhD, we now have a beautiful son...And while I still don't think one can beat MND (in a sense of being cured) I guess in our own way we chipped away at its armour.
Dani