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Foxmark

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Nov 12, 2017
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Learn about ALS
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Turin
hello all,

as you can read here https://www.alsforums.com/forum/do-i-have-als-als/40073-mum-diseas-strange-situation.html (a link of my old thread) my mum was diagnosed in Feb 18 with 2nd MND.
doctors said that is not possible to see the future but as we see in her clinical history it is probably that the situation will be worst than now.
from Feb to April and the first 2 months of Riluzolo, my mum has a slightly aggravation in syntoms, especially for stand up into the bathroom for several minutes (from 5 to 10).
as you can see in the upper link, she has left leg problems and somethingh minor into the right.
no bulbar or upper limbs signs that someone put into the periodic check.
the problem is: why in April's check doctors put only MND and not 2nd MND?
is it an accurency error or is it volunteer?
so she has all the equipment for walking safely (AFO from 2014 and walker and wheelchair for long distance).what is not clear is the future (i know that it is impossible to see the future but at least some ideas) and future scenario of the situation, also related to the timing that the problems start, that it is MAy 2013 with problems in walking (not correct foot position when you walk, than ankle problems anof course left leg atrophy under the knee and some minor problems into the right)
EMG show some zone of denervation also and some problems related to communication between muscles and nerves.
i know that is difficult to find out something but i would try to ask here for some helpful idea.
thanks in advance
see you
marco
 
I am sorry I am confused here. Is second MND a typo or mistranslation? I think before you said they suspected MND?

If she remains without a firm diagnosis it is even harder to predict what might happen than if she had a diagnosis and predictions are only guesses anyway.

She also has walking aids so that is good. It is important to prevent falls, maintain weight and conserve energy if this is MND. Otherwise I would prepare for progression hoping it won’t happen and follow up as advised by the doctors. I think you were sent to an ALS doctor in Turin ? Is s/he following your mother now?
 
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hi Nikki!
yes they suspect MND but not clear which kind of disease.
you are right she has all the equipment for moving and she is followed from Turin center regional expert for MND.
what is strange in our mind is the very long story and the situation that is more or less similar to 1 or 2 years ago and we are not considering ALS unitl in November that the neurologist suggest to go to the center.
due to tlong time ago (5 yrs) and the usualy ALS progression time we are not thinking about this possibility.
we are thinking about neuropathy or also some MND but not ALS.
is it possible that during periodical check the diagosis change or will be modify?and in what kind of disease?Flail leg?PMA?
very difficult to understand and to go on during all days....
my mus accept this diagnosis but she is a little bit confused for diagnosis and also for the future....
 
Hello all,i would undertand if it is possible a thing:could rilutek affect in term of muscle weakness?because from the start of taking pills,some strangr thing happen for example my mum is affected for standing for examble in front of the mirror.this ia not present before the rilutek.so yesterday go on the stairs because she live il 3rd floor without any huge problems,today she has some sensation to have legs not so strong in order to stay some minutes in front of the mirror.could anyone help in this comprehension?thanks
 
Supposedly loss of strength is a possible side effect of riluzole. Of course loss of strength is a side effect of ALS too. Sometimes we reach a tipping point where the loss of another muscle makes a big difference in function. please help her stay safe and not fall. Are you and she looking at her living situation? Third floor if no elevator sounds like a problem
 
For sure nikki the problem is the house and as a son i try to encourage my parents to move.on the other side what is difficult is the diagnosis until now...in the centre they are using the strategy of come here every 3 months and we will see.but...for us it is difficult to live without any thought.what kind of other MND AFFECT THE 2ND motoneuron?in reality we have not a clear diagnosis of Als due to the progression but anyone know and say it is this kind of disease...this is frustrating!
 
I am sorry I really don’t understand this second motor neuron question? Are you perhaps saying she has findings only in the upper motor neurons or the lower motor motor neurons. This is not asking if she is affected only in legs or only arms. We have upper and lower motor neurons in all areas. Upper motor neurons problems show up on exam as reflex changes , clonus and spasticity. Lower motor neuron problems are major weakness and a specific EMG pattern Sonetimes the pattern is not clear and they have to follow a patient over time.

Even without a diagnosis though if the doctor says it is some kind of progressive neurodegenerative process planning is urgent. Labels matter less than function sometimes
 
Sorry but i use english in not so good way...but yes she has signs only in legs from 2013 and the Emg show more or less the same.no signs in other parts only some fasciculation in left shoulder and problems ol left leg and minor in right leg.
This is the situation from medical point of view ( obvious is a summary) but i'm concerned that this kind of legs weakness incstanding position began exactly 10 days after the rilutek starting somministration.is it a case?i don't know but some worries comes about that...
 
She could stop it for a week or two and see what happens. If she improves restart it to see if it hsppens agsin. One episode could be the coincidence of a bad day or two. Twice would tell you.
 
Nikki it is exact what i am thinking about...1 or 2 weeks cannot affect anything but it should demonstrate if the rilutek has this bed behaviouf in my mum.thanks a lot i would inform about next period!
 
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