Lunasin results/reviews/issues

Status
Not open for further replies.

Jocalyn8

Active member
Joined
Jun 26, 2016
Messages
86
Reason
PALS
Diagnosis
10/2015
Country
us
State
north carolina
City
Charlotte
Since so many of us are trying the Lunasin protocol, I thought it might be helpful to group all related comments together.

Please let me know your thoughts: I have been on lunasin for two months and the major difference I have noticed the twitching has really reduced. I am not sure if that is good or bad... In addition my limb progression has seems to have plateaued .

Cheers
Jocalyn
 

scaredwifetx

Very helpful member
Forum Supporter
Joined
Jul 25, 2015
Messages
1,573
Reason
CALS
Diagnosis
07/2015
Country
US
State
tx
City
Dallas
Great news Jocelyn!
 

bear1973

Distinguished member
Joined
Mar 12, 2015
Messages
129
Reason
PALS
Diagnosis
05/2015
Country
CA
State
Ontario
City
Barrie
I've been on it for about 6 weeks and haven't noticed any difference....that may be a good thing in itself.
 

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
City
renick
Been doing lunasin for 4 mons . now.
Hard for me to tell, certainly no reversal!
Maybe slowing down progression some.
Still worth trying it!
Good to all.
Chally
 

azgirl

Senior member
Joined
Jan 20, 2014
Messages
956
Reason
PALS
Diagnosis
12/2013
Country
US
State
AZ
City
Tucson
Almost 2 months on lunasin, following the Duke protocol on my own.

Had some dramatic changes in the first two weeks with my hand movement and core strength. Nothing new since but no new decline either. Going to give it six months and decide how to proceed.

I have noticed increased fasiculations in areas like my butt, which had seemed dead before. Perhaps this varies depending on your level of progression. I also notice that it is more important than ever to not overdo it. I spent the whole day not able to move my hand and thought oh crap I have lost that again. After A good day of rest it came back again.

Thanks Jocelyn or getting all our reports in one place.
 

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,562
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Matt is at about six months now. He noticed a response almost immediately--by the end of the first week there was small movement in his toes. His legs had been completely gone, not even any more fasciculations. They have returned and his leg strength was measured at the Duke Clinic as +2, up from 0. All movement so far had been with no resistance, but two days ago he uncrossed his ankles with upward movement against gravity.

Unfortunately, his core and arm muscles continue to deteriorate. I think that is happening at a slower pace than before. I had expected to be feeding him by now and he's still hanging in there. My fingers are crossed that the benefit works its way up his body :). He's starting to slur a bit when he talks, but I'm not sure if his refusal to use the Trilogy more than 4 hours a night is contributing to that decline. I know he's more alert when he uses it more. CO2--a cheap drunk.

The folks at Duke are very excited as they have now been able to document his reversal.

I have posted some videos on UTube and put some links on the Started Lunasin Trial thread. If I could figure out how to tell you to find my videos on UTube I would...


Oh, Azgirl, in Matt's case, the returned fasciculations preceded return of movement. His calls also seem fuller. Hang in there!!
Becky
 

debwilson77

Active member
Joined
Jan 10, 2016
Messages
74
Reason
CALS
Diagnosis
02/2016
Country
US
State
AZ
City
chandler
My Husband has been on the Duke protocol now for 3 months and feels his breathing and swallowing are better. When he started it he seem to be going downhill pretty quick but now seems to be stable. At his clinic in June he had no measurable loss over his March clinic.
He definitely feels it's helping. Will be sticking with int for the long haul.
 

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,562
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Jocalyn, what was your condition before starting Lunasin? If your fasciculations have lessened, is that in areas that you'd lost use of muscles, or in areas that were twitching but still working?
 

debwilson77

Active member
Joined
Jan 10, 2016
Messages
74
Reason
CALS
Diagnosis
02/2016
Country
US
State
AZ
City
chandler
My husband started losing speech and had breathing problems first, still has use of all his limbs but tons of fatigue. He still has twitches but I think they are milder. He feels his breathing and swallowing are better, his voice is louder but hard to understand.
 

Jocalyn8

Active member
Joined
Jun 26, 2016
Messages
86
Reason
PALS
Diagnosis
10/2015
Country
us
State
north carolina
City
Charlotte
I am bulbar onset so speech and swallowing are my hardest hit areas.

I am on trilogy at night since dx 10/15. I can still walk and use my limbs but losing strength and balance. I used to have twitching in my core all night long. In April I noticed loss of strength in my hands getting worse every day. It seems to have stopped. My breathing and swallowing still are getting worse. Voice is holding.

I have decided to go ahead with feeding tube next week while my breathing is still above 50%.
 

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,562
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Jocalyn, I hope the fasciculations stopping in your core now means that the process has slowed or reversed there. I would sure love to understand how and why it affects some areas but apparently not others. Or perhaps not yet. Fingers crossed!
Becky
 

Jocalyn8

Active member
Joined
Jun 26, 2016
Messages
86
Reason
PALS
Diagnosis
10/2015
Country
us
State
north carolina
City
Charlotte
I am getting my peg Monday does anyone know the lunasin mix for the peg feeding.
 

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,562
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Jocalyn, the quantity of product would remain the same, what you mix it with is really up to you. Just mix it so that it will pour through the tube.


OK family, here's some really really good news. Yesterday Matt started raising his thighs agains Gravity (while in bed). We've seen him swing the legs while in the sling and slide them, but he's gone from absolutely no muscle strength at all to starting to move against gravity. Most of the world would see this little movement and not understand, but we do!!

We are at six months.

Becky
The Queen of Pushing Those Shakes
 

debwilson77

Active member
Joined
Jan 10, 2016
Messages
74
Reason
CALS
Diagnosis
02/2016
Country
US
State
AZ
City
chandler
Wow, that's very encouraging!!!
 
Status
Not open for further replies.
Top