My brother, recently diagnosed with ALS, is going to get into the Healey Trial. Here's what they are currently testing. Anybody with experience with either of these drugs?
DNL343 (Regimen G)
Oral drug once daily taken with water or soft food
Optional lumbar puncture
3:1 Active drug to placebo...
Patient: Doctor, what should I do if my temperature goes up a point or more?
Doctor: Sell!
Patient: Doctor, you've gotta help me. I eat apples, apples later come out into the toilet. I eat bananas, bananas come out.
Doctor: That's easy. Eat shit.
Patient: Doctor, Doctor, I broke my arm in...
I was diagnosed with PBP a year ago this week. I frequently check in and read most of the posts for the day. It just dawned on my husband and I that none of the four neurologists I have seen have mentioned physical therapy or drugs that might delay the progression of this beast.
Until about...
Wondering what others may think of the idea of Human Retro Viruses being thought to be a cause of ALS and use of HIV drugs to treat PALS?
Info on the study:
https://www.ninds.nih.gov/Disorders/Clinical-Trials/HERV-K-Suppression-Using-Antiretroviral-Therapy-Volunteers-Amyotrophic
The clinical...
Hi there.
I'm 27 years old, female an environmental engineer.
On September, i had weakness on my left arm and then twitches under my foot. Neuro ordered an EMG test, i had EMG on november 9th. Results was clear, i started psychological therapy but i hadn't use drugs, i take only the therapy...
My husband is in his late 40s. We were told yesterday by our regional ALS specialist that he has ALS. I am in shock and devastated. They started him on drugs already and we are getting him a second option in Boston soon. Hopefully next week.
I need help putting the next few weeks together. We...
*after writing this, I see I am just regergitating all the symptoms I have been having and it lead to a long post. My intention is to let you know what ALL is going on when we all know there is probably just specific symptoms that I am focusing on for this forum.*
Thanks for reading this long...
This may be slightly off-topic and if so, please bear with me. It is a result of my diagnosis/symptoms, and I don't know of a more knowledgeable or supportive community to ask:
I was diagnosed about 13 months ago, with lower extremity onset. I can still walk with difficulty, but see progressing...
Since Medicare open enrollment is happening through December 7, just a quick note on some 2019 changes that could affect your decisions. It is always worth looking at what you have vs. the competition every year. Not all counties have MA plans available if you are <65 or at all, but many do...
I read about Requip and it seemed like a good gamble so I got my PCP to write me a script for it. I really wanted to get Ibudilast. I am not a chemist, but it seems that Requip (C16H24N2O) and would also act similar to ibudilast (C14H18N2O). What opinions does anyone have?