Hi,

I did a long Ibudilast trial at Mass General.

No issues , but did not see any real benefits.

and scans to my brain did show no reduction of inflammation.

trial was 9 months.

i was on both riluzole and Neudexta.

Hi Fatima,

does your mother use Neudexta? It really helps my speech.

is expensive, but on the Neudexta website you may find a coupon.

is worth to try.

all the best

I have been there 4 times. Not sure I did see any results.

they are very efficient and professional. Unfortunately in my case I can’t say I did help.

 

still given we have no many other therapies available, we have to try all possible ones

all the best

Hi Ahmed,

unfortunately I don’t have his contact info.

sorry.

for Neoronata-r where would you get the treatment done?

in Korea is a different one, similar but not the same.

all the best Romolo

Hi Mark,

Monday morning i have a video call with mi MGH docty. I will check with her.

this is the first I heard of Parampanel .
will let you know.

stay safe

I take Neudexta 2 a day. Helps speech and salivation. Seems to level emotions, thus allowing to talk without fear to not been understood.

i stopped for one week to verify if was really Neudexta helping or a change in symptoms…..huge difference!

is expensive but works.

ps: at the Neudexta web site i was able to find a coupon that… Read more

Hi Mark,

I did post some details on March 4th (see above).

in short no efficacy has been proven on all the participants to the study.

the measurement was done by brain scans (3 in total), and no significant impact was noticeable.

giVen that, I will wait for other trials , as once you join a trial, you are precluded to partecipade in… Read more

Hi Mark,

I did my trial at MGH too. Strange they start a new one, since mine was not successful.

i will send a mail to my doctor , she was the lead on my trial, and ask more info.

will let you know.

imwas on Neudexta, and oral B12. I started radicava just ad the end the trial, as recommended by my dr. So I assume radicava is allowed.

stay well

Hi,

for me Magnesium works.

if I stop for few days taking magnesium supplement I Immediately notice a lot of twitches and some cramps.
as soon as I resume the magnesium pills , they disappear, or get very mild.

i use cvs chewable 400mg pils. 2 each day

Hi Mark,

I was on Neudexta , but started b12 injections only after is stopped Ibudilast trial.

i hope this helps

ps: where is the Ibudilast trial? What is the dosage?

 

ibudilast seems very effective for MS treatment.

all the best

HI,

I have been to Korea 4 Times in the last 12 months.

I did not notice any change on the pace of disease progression.

in Seoul a meet an American doctor with ALS, he went 3 times with good visible results.

so……hard to say if treatment helps or not.

cost is about 40K each injection + travel.

procedure is not to painful , but annoying as… Read more

HI,

I have been to Korea 4 Times in the last 12 months.

I did not notice any change on the pace of disease progression.

in Seoul a meet an American doctor with ALS, he went 3 times with good visible results.

so……hard to say if treatment helps or not.

cost is about 40K each injection + travel.

procedure is not to painful ,… Read more

HI,

I leave no too far from Mass General, and was on and Ibudilast “official” trial for 1 year.

I took 10 pills each day, and undergo 3 Brain scanning to verify if Brain inflammation would decrease.

Results: inconclusive. not only for me but for most people on the trial. I got the full (verbal) report from my MGH doctor.

Good news I had… Read more

I am on Radicava since begin 2019  , and continue to take Riluzole. no side effects.

hard to say if Radicava helps, progression (at the least the visible effects of ALS are not linear).

I am an engineer, and if I can measure and correlate data, I can’t form a firm opinion.

as a”feeling (again not data driven ) I believe it doesn’t do much.… Read more