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corwin

Active member
Joined
Oct 20, 2015
Messages
47
Reason
DX MND
Diagnosis
01/2016
Country
BG
State
VN
City
vn
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....
 

WendyWooG

Senior member
Joined
Jan 10, 2016
Messages
518
Reason
PALS
Diagnosis
07/2016
Country
Uk
State
Hertfordshire
City
Stevenage
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.

Wendy
 

Angiegal

Distinguished member
Joined
Feb 15, 2017
Messages
301
Reason
PALS
Diagnosis
09/2015
Country
CA
State
Ontario
City
Kitchener
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.
Angie
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,565
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
OK
City
Cleveland
Sorry to hear about your dx. Good luck!
 

Atsugi

Moderator emeritus
Joined
Jan 11, 2011
Messages
5,189
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
Wasn't expecting that. Wishing you the best.
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,188
Reason
DX MND
Diagnosis
07/2014
Country
US
State
CO
City
Vail
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.

Steve
 

GregK

Moderator emeritus
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
City
Colorado Springs
sorry and good luck.

but don't piss your money away in Bangkok.
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
568
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
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.

Al
 
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