corwin
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- Oct 20, 2015
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Hi to all,
after 5 days stay in ALS clinik in Germany, I was finally diagnosed with bulbar onsen ALS with sensory involment...
The professor told me that when the people are young there was more evidence of widespread muscle wasting in onset with sensory stuff....
I also have tongue wasting, arms wasting, shoulder wasting, legs waisting, foot wasting and swallowing and breathing problems...
It is kind of reliev becaouse I expect it -2 years with declining symptoms... but not happy about the end statement....
He told me there is 20 procent chance of sma type 4 because i have chronic denervation in all muscles ( which is seen often in sma type 4) and no active but I have also umn signs wich are not seen in sma..
So still now he think I am slow progressor and because of my young age ( 34) he expect 3 to 5 years.
SO the best think is that there is a chance my little dougther will remember me ( she is almost 3 years )))
He prescibes me rilutek but i will take also lunasin.
I will try also stemm cell treatment in bangkok in global stemm cell
SO this is my last post in this forum - I was searching for help in diagnosis, in the end I received it.
Wish you all luck and wish me slow progression....
after 5 days stay in ALS clinik in Germany, I was finally diagnosed with bulbar onsen ALS with sensory involment...
The professor told me that when the people are young there was more evidence of widespread muscle wasting in onset with sensory stuff....
I also have tongue wasting, arms wasting, shoulder wasting, legs waisting, foot wasting and swallowing and breathing problems...
It is kind of reliev becaouse I expect it -2 years with declining symptoms... but not happy about the end statement....
He told me there is 20 procent chance of sma type 4 because i have chronic denervation in all muscles ( which is seen often in sma type 4) and no active but I have also umn signs wich are not seen in sma..
So still now he think I am slow progressor and because of my young age ( 34) he expect 3 to 5 years.
SO the best think is that there is a chance my little dougther will remember me ( she is almost 3 years )))
He prescibes me rilutek but i will take also lunasin.
I will try also stemm cell treatment in bangkok in global stemm cell
SO this is my last post in this forum - I was searching for help in diagnosis, in the end I received it.
Wish you all luck and wish me slow progression....