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Romolo Pallini replied to the topic Ibudilast (Ketas) in the forum Research Topics 3 years ago
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.
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Romolo Pallini replied to the topic Stem Cells – Neoronata-R in the forum Research Topics 3 years ago
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
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Romolo Pallini replied to the topic Stem Cells – Neoronata-R in the forum Research Topics 3 years ago
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
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Romolo Pallini replied to the topic Stem Cells – Neoronata-R in the forum Research Topics 3 years ago
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
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Romolo Pallini replied to the topic Any information on availability of Ibudilast? in the forum Research Topics 3 years, 2 months ago
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
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Romolo Pallini replied to the topic My experience with Nuedexta in the forum Living With ALS 3 years, 2 months ago
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…[Read more]
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Amanda and
Romolo Pallini are now friends 3 years, 2 months ago
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Romolo Pallini replied to the topic Any information on availability of Ibudilast? in the forum Research Topics 3 years, 2 months ago
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.
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Romolo Pallini replied to the topic Any information on availability of Ibudilast? in the forum Research Topics 3 years, 2 months ago
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
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Romolo Pallini posted a new activity comment 3 years, 2 months ago
Hi Donna,
Did he try magnesium?
I had a lots of twitching at the beginning, magnesium really helps me.
All the best -
Kathryn F. Kennedy and
Romolo Pallini are now friends 3 years, 2 months ago
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Romolo Pallini replied to the topic Do you experience muscle twitching? in the forum Living With ALS 3 years, 2 months ago
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
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Romolo Pallini replied to the topic Any information on availability of Ibudilast? in the forum Research Topics 3 years, 2 months ago
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
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Romolo Pallini replied to the topic Radicava? – – What advice, comments or tips do you have? in the forum Living With ALS 3 years, 2 months ago
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…[Read more]
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Romolo Pallini replied to the topic Stem Cells – Neoronata-R in the forum Research Topics 3 years, 2 months ago
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…[Read more]
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Romolo Pallini replied to the topic Any information on availability of Ibudilast? in the forum Research Topics 3 years, 2 months ago
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…[Read more]
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Romolo Pallini replied to the topic Radicava? – – What advice, comments or tips do you have? in the forum Living With ALS 3 years, 2 months ago
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…[Read more]
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Romolo Pallini became a registered member 3 years, 2 months ago
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Hello Romolo,
Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns or even…[Read more]
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Hello Romolo, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I l…[Read more]
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