treatment

I'm having pain from my outer wrist, up the back of my hand, and up the fingers to about the finger joints half-way up. The pain is only on that outer side; --the inside of my wrist, my palm, and underside of fingers don't hurt. This is on my left hand where I have a lot of atrophy, including...

RCH4 revisited again I have been on the ALS drug RCH4 for the past 19 months and I am upset about the moderators comments which are most unfair to a charity who has provided both support and RCH4 free of charge worldwide for years. The moderator here, Laurie, has locked two previous threads...

I'll get to the update. The VitalityALS phase three trial ended or all participants and trials in October. All reports and data were due for submission. They now think it will be March before publication. The goal of continued good breathing numbers is holding steady. My FVC and SVC numbers...

Just wondering what others' experiences have been after wrapping up the study. Hubbys last treatment was 2 months ago and although he was told that they Thought residual effects would continue for 3 months, I feel he has gone down hill rapidly since ending. It's almost as though the...

Assuming you had access to both, and cost was not an issue, which would you choose? Radicava or a 50/50 coin flip as a participant in the NurOwn stem cell trial (placebo or actual treatment)? You can't do both. My wife started Radicava last week, but is still haunted by the PR from BrainStorm...

https://photos.app.goo.gl/ar2kXxEgUT8chLQ63So, I was ecstatic when the doctor's told me that I don't have ALS but Dr. Harati insists that my fasciculations are benign and he wants to do the wait and see approach. Dr. Killian recommended me that I see Dr. Aziz Shaibani in Houston. Almost 4...

Hi my exboyfriend has had als for a year he had been in hospital before as went blue when sleeping then he came home. Now he had to call the ambulance again as thought he had a cold and they had to put him on ventialtors, intravenous food as cannot eat, cannot breathe or move. I am just...

I'm no longer eligible, so don't know how good a study it is, but in case you're not on the mailing list: This initiative, titled IMPACT-ALS (Investigating and Measuring Patient And Caregiver Trends about ALS), is a collaboration with three industry partners (Biogen, Ionis, and Cytokinetics)...

Anyone out there going through menopause with ALS? The reason for treatment is for extreme hot flashes and no sleep. Not sure about adding hormones to the mix. If anyone has had experience with this combination would welcome advice.

Hope I'm posting in appropriate forum. As previously posted, my twin brother was diagnosed w/ >90% certainty at Duke w/ ALS. He's had drop foot, weakness, leg, abdominal, throat, neck cramps and significant atrophy. He had a full MRI ordered by another specialist on the 9/18. Follow up on 10/3...