[Romolo Pallini]

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.

[Romolo Pallini]

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

[Romolo Pallini]

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

[Romolo Pallini]

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

[Romolo Pallini]

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

[Romolo Pallini]

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 lowered dramatically the price. CVS was able to apply it several months.

[Romolo Pallini]

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 others.

I am on radicava, but honestly can’t tell if it helps.

Take care.

[Romolo Pallini]

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

[Romolo Pallini]

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

[Romolo Pallini]

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

[Romolo Pallini]

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 you have to stay flat 6h after each procedure.

1st trip bone marrow extraction . after 6 hours flat.

2nd trip.: day one spinal fluid extraction. after 6 hours flat.

day 2 Stem Cells ( mixed with spinal fluid) injections . again 6 hours flat. this procedure may result in Flu like symptoms.

No sure I will do one more injection as I don’t see good results. but we all react to treatments in different ways.

good luck, and contact me for more details

[Romolo Pallini]

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 you have to stay flat 6h after each procedure.

1st trip bone marrow extraction . after 6 hours flat.

2nd trip.: day one spinal fluid extraction. after 6 hours flat.

day 2 Stem Cells ( mixed with spinal fluid) injections . again 6 hours flat. this procedure may result in Flu like symptoms.

No sure I will do one more injection as I don’t see good results. but we all react to treatments in different ways.

good luck, and contact me for more details.

 

[Romolo Pallini]

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 no side effects even if the dosage was massive (compared to what they use for MS treatment).

I know some people continued to take it, as they believed it helped.

I Korea , the doctors advice to take Ibudilast, again as they believe it helps.

in Summary, if you have the financial means, no arm in trying since side effects  are (at the least for me) negligible.

unfortunately seems ALS reacts to treatments differently from person to person.

please contact me if you need further details.

all the best

 

 

[Romolo Pallini]

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. but given no side effects I may stay on it a bit longer and evaluate further.

PS: I have no port, they insert a pic line in my arm veins , it can stay 3 days, and no secondary issues. a good , non intrusive way to start the Radicava Jurney.

PS,PS: I wend to Korea for Stem Cell treatment 4 times, I will write about it later.