Hi guys,
Following my initial post (here) series of tests later, second opinion doctor agree's on MND as the clinical diagnosis. I have a very atypical onset of symptoms and slow progression and hence, unable to find a patient story that is similar to my case. I hope you guys can help me with some questions or point me in general direction.
1) Is there any estimation on the prognosis of the disease? Any general pattern/series or is it entirely normal? (My onset was in my hand, spreading from my little finger to outwards - not beyond the wrist so far. It plateaued for around an year before bulbar onset) Overall it's the fourth year and the progression seems really slow compared to what I have been reading here. Are there case studies/patient stories on this forum where people have cataloged their disease progressions?
2) At times it is difficult to isolate symptoms from MND vs other causes. I have Asthma and generally contribute all breathing issues to it. However, during a recent (high-altitude) hiking/trekking trip last August proved very taxing on my breathing. It left me short of breath to the point of inability to complete sentences at times. And I do feel generally short on breath as compared to before. (N.B similar trip taken in 2015 was not even close to affecting my breathing to such an extent). For people who have developed respiratory problems, how did it start/what did you initially feel?
3) Are the respiratory symptoms related to bulbar onset?
4) Is MND fatal? I know this might come as a naive question but I have not come across text with a straight forward answer. From my understanding, it is ultimately fatal, but there are edge cases where patients tend to live on with severe disability. Is this understanding sound?
I know that some of you have to put in considerable effort to come here and contribute support, and if you are reading this, I am thankful to you.
Following my initial post (here) series of tests later, second opinion doctor agree's on MND as the clinical diagnosis. I have a very atypical onset of symptoms and slow progression and hence, unable to find a patient story that is similar to my case. I hope you guys can help me with some questions or point me in general direction.
1) Is there any estimation on the prognosis of the disease? Any general pattern/series or is it entirely normal? (My onset was in my hand, spreading from my little finger to outwards - not beyond the wrist so far. It plateaued for around an year before bulbar onset) Overall it's the fourth year and the progression seems really slow compared to what I have been reading here. Are there case studies/patient stories on this forum where people have cataloged their disease progressions?
2) At times it is difficult to isolate symptoms from MND vs other causes. I have Asthma and generally contribute all breathing issues to it. However, during a recent (high-altitude) hiking/trekking trip last August proved very taxing on my breathing. It left me short of breath to the point of inability to complete sentences at times. And I do feel generally short on breath as compared to before. (N.B similar trip taken in 2015 was not even close to affecting my breathing to such an extent). For people who have developed respiratory problems, how did it start/what did you initially feel?
3) Are the respiratory symptoms related to bulbar onset?
4) Is MND fatal? I know this might come as a naive question but I have not come across text with a straight forward answer. From my understanding, it is ultimately fatal, but there are edge cases where patients tend to live on with severe disability. Is this understanding sound?
I know that some of you have to put in considerable effort to come here and contribute support, and if you are reading this, I am thankful to you.
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