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Xandr0s

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PALS
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Lahore
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.
 
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To briefly address your questions -- (and please don't bold text in future),

1) There are slow-progressing MND forms. You obviously have one. Most of the patterns reported here and in the literature won't match yours. The way to bet is linear progression for at least a while, but progression will speed and slow at different points for most people.

2) If you are short at breath at rest and your asthma is well-controlled, you should ask that pulmonary function tests be performed. Anecdotes are no substitute for that.

3) Some of the muscles used in breathing are in the bulbar region. Others, e.g. in the chest and abdomen, are not.

4) Most MND is ultimately the cause of death. There have been rare reports of "reversed" MND. Data for the ALS form suggest 10% live past 10 years, but these are old, flawed studies. Our best advice here is to live every day until you can't, or don't want to.

Best,
Laurie
 
1) Is there any estimation on the prognosis of the disease? Any general pattern/series or is it entirely normal?

Addendum:
1) Any general pattern/series or is it entirely random*?
What I meant was the onset of symptoms as disease progresses. Is there any way to predict what muscles will be targetted next? I have unsustained Clonus in my left foot, is that a good indication of future onset/weakness?
 
Sometimes muscles do signal future weakness as you describe. There is no overall pattern esp. in slow progression and no point in trying to guess. Stay ahead of your equipment needs.
 
This is one of the very frustrating issues with the disease. Be as prepared as possible and find an advocate to help as soon as you can.paperwork and phone calls are draining.
 
MND as a diagnosis is used in some countries synonymously with ALS and in that case would probably be an accurate diagnosis. In other countries, including the U. S, MND is a catch all for many diseases affecting motor neurons, some treatable if not curable. Before talking about progression and prognosis, it would be really helpful to have your neurologist clarify the type of MND he believes you have. As you noted, the symptoms you have are not typical (though possible) for the type of MND, ALS, most of us here have.

For a look at the possible varieties of MND check out the Differential diagnoses section of this page,
Motor Syndromes
 
Thank you Laurie. I'll consult my physician regarding pulmonary function tests. And I will be careful not to format the text likeso in future.

@Gooseberry, it indeed is! I stand at a point in life where I have to make decisions with this in mind (for the future ofc) and the uncertainty does not help! I am only 22 years old though and live with my parents (student life) So at least I have major support when it comes to advocacy. Thank you.
 
MND as a diagnosis is used in some countries synonymously with ALS and in that case would probably be an accurate diagnosis. In other countries, including the U. S, MND is a catch all for many diseases affecting motor neurons, some treatable if not curable. Before talking about progression and prognosis, it would be really helpful to have your neurologist clarify the type of MND he believes you have. As you noted, the symptoms you have are not typical (though possible) for the type of MND, ALS, most of us here have.

For a look at the possible varieties of MND check out the Differential diagnoses section of this page,
Motor Syndromes


The consensus rests on ALS/PLS. One of the doctors simply said it's not PLS, the other did say you should read about PLS. I believe he wanted to give hope, but hey, the clinical picture has not been super clear in my case, we never know!
 
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