New Research Please Read!

Status
Not open for further replies.

old dog

Distinguished member
Joined
Aug 27, 2011
Messages
279
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
OR
City
Scio
Fascinating! Especially to those of us who believe a virus triggered the disease. Is anyone out there who had his spleen removed prior to onset of symptoms?
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
Great news for future PALS!
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
City
Southborough
no spleen, but had a strange lyme-like virus (negative for lyme numerous times) and then started developing symptoms...
 

nightwolf_mk

Distinguished member
Joined
Aug 1, 2007
Messages
107
Diagnosis
05/2012
Country
BR
State
SP
City
Gru
With this knowledge plus the fact that there are no effective tratments I think they should give drugs that regulates the monocytes to the pals (drugs that already exists) and see the clinical outcomes instead of waiting (again) many years before trying it...
 

sadiemae

Very helpful member
Joined
Sep 20, 2009
Messages
2,397
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
Ceftriaxone has been available for other diseases for a long time. Crazy that it was pulled after several years of being in trial stage for ALS.
 

Luke

Distinguished member
Joined
Apr 3, 2012
Messages
314
Country
US
State
Unspecified
City
Unspecified
There's a link being studied between the Epstein Barr virus ("mono") and ALS. Mono impacts the spleen, from what I understand, though I'm not clear on exactly how, or to what extent. I had mono at age 24. At age 32 I started developing as-yet-undiagnosed motor symptoms. I wonder how many PALS or those with similar diseases had mono or one of the other epstien-family viruses prior to onset of symptoms. I guess we could all drive ourselves crazy trying to pinpoint where it started... Good thing the scientists who are actually qualified to look into this stuff are on top of it. It definitely feels like there's something big about to be discovered soon.
 

vzandt

Senior member
Joined
Nov 12, 2011
Messages
570
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
N.H.
City
Noneknown
Hopefully real soon.
 

vzandt

Senior member
Joined
Nov 12, 2011
Messages
570
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
N.H.
City
Noneknown
With this knowledge plus the fact that there are no effective tratments I think they should give drugs that regulates the monocytes to the pals (drugs that already exists) and see the clinical outcomes instead of waiting (again) many years before trying it...

What are these drugs?
 

Susan10

Distinguished member
Joined
Nov 26, 2011
Messages
185
Reason
PALS
Diagnosis
09/2011
Country
US
State
OK
City
Bible Belt
the worst virus i ever had was the flu...but i wasnt sick at all in the 3 yrs pre-diagnosis -- not even a cold.
 

CindyRN

Distinguished member
Joined
Jul 5, 2012
Messages
110
Reason
PALS
Diagnosis
01/2012
Country
US
State
Montana
City
Great Falls
Susan,

Your story sounds like mine. I had the swine flu October of 09, in bed for a week. I used to get bronchitis 2x/year in April and October...Have not had one single cold since I had the swine flu. Then my symptoms began 4/11.
 

Jennifer D

Active member
Joined
Dec 19, 2011
Messages
74
Diagnosis
03/2012
Country
US
State
New York
City
New York
Thanks for sharing this promising news!

I do firmly believe they will find a cure or at least a way to really slow down this horrible disease soon........It's all I have ever thought about since I was a kid and my grandfather had ALS, now, with my 45 year old husband diagnosed I can only think positive thoughts!

Jennifer
 

Filmmaker

Active member
Joined
Nov 24, 2011
Messages
76
Reason
PALS
Country
CA
State
Québec
City
Montreal
that's great news, but does that mean those who have their spleen removed will not develop ALS or will have slower progression? just like those with myasthenia Gravis who have their thymus removed?
 

chrisroski

Active member
Joined
Apr 12, 2012
Messages
93
Reason
PALS
Diagnosis
01/2012
Country
US
State
Pa
City
Philadelphia
Well if they can't find a cure right now, I will take slowing the progression down until they do. Since I started reading on the disease almost a year ago, it does seem like they are making some progress here. I hope for all our sakes, they give us something soon. God Bless Us All
 
Status
Not open for further replies.
Top