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Active member
Oct 20, 2015
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....
I am sorry to hear this Corwin, you have had a long and difficult path to diagnosis with some very atypical symptoms. I hope you have a slow progression.
Enjoy your daughter, my granddaughter is 4 children of that age are incredibly accepting of illness and disability and you can find new ways to spend lovely memory making times with her.

Good luck to you Corwin.
Just a thought instead of logging off and not coming back at all, why not keep us on the back burner?
This is a great site for support, and we might have some helpful hints through your journey.
Sorry to hear about your dx. Good luck!
Wasn't expecting that. Wishing you the best.
I have followed your progress as you wrote about it in other threads. I was hopeful that you would eventually be diagnosed with something other than ALS.

So sorry to have to welcome you to the PALS family. Know that you are in very good company here and among friends.

sorry and good luck.

but don't piss your money away in Bangkok.
Well Corbin I am sure you know what we think of stem cell clinics. But aside from that the head of my ALS clinic also said the life expectancy is 3 to 5 years but also some last decades. I would suggest you save your money because you may last decades.

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