[lyle-davis]

I stopped AMX0035 / Relyvrio due to gastric discomfort, and it also gave me fatigue. I was actually taking it as AMX0035 provided by my ALS clinic, and I had already received a couple months worth of Relyvrio (same exact product, as we know, just named and branded differently). So, I would like to find a way to donate all my unused/unopened packets to someone who can put it all to good use, as I can’t return that to the clinic since they would just have to dispose of it.  I’m in Fort Lauderdale.

[lyle-davis]

Thank you Dave F for starting this thread, and to all who have contributed. I too have watched Dr. Bedlack’s interview regarding Clenbuterol (twice) and I am very seriously considering adding it to my regimen. So I am very interested in learning everything I can about other people’s experiences and perspectives with and about it.

March 30 will be the two year anniversary of my ALS diagnosis (just a couple weeks after Covid shut the world down, thank you very much!)  Kathleen, welcome to the club – it’s definitely a club that none of us wanted to join, but I can assure you it is populated with lots of truly amazing people and lots of support and learning and wisdom. I am fortunate enough to still be doing quite well, and especially after a very rough first few months have stabilized to a very slow progression. My most pronounced effects are bulbar (noticeably impaired speech but I can still speak completely understandably, and eat normally, just much more slowly) and upper body muscle loss (hence the special interest in Clenbuterol) and much diminishment of strengthen and dexterity in my hands.

As others have expressed, we all resonate with your frustration at how little is available now and how much of what appears promising is in the pipeline for somewhere in the future… but what about now?

Part of why these forums and Dr. Bedlack and others are so incredibly important, is that they offer hope and wisdom and possibility beyond what the conventional medical establishment is able to provide, while helping to avoid the snake-oil and quackery that preys on the desperation and bewilderment that can come with confronting ALS. I am fortunate to live in walking distance to a terrific ALS multidisciplinary clinic and work with a great team there. However, they are in many ways restricted by all of the constraints that others have written and spoken of. For that reason, I also work with a functional medicine doctor, and I truly credit my work with him for much of my wellness. My work with him really helped improve the gut issues I was experiencing, and made real progress in alleviating my fatigue. If you have the resources to work with a good functional medicine doctor, I would encourage you to check it out, as they can complement and go beyond what you’re able to do in the conventional clinic. I also do mild yoga, work with a massage therapist, and lately with an acupuncturist, and find these to be helpful.  Others in these forums have shared a lot of great advice and ideals for self-care, and we can all continue to grow and evolve our self-care programs in an ongoing way.

Thanks again to all who contribute here.  I’m especially hoping for more input regarding Clenbuterol, and looking forward to all the other ideas and experiences that are shared here.

 

[lyle-davis]

Mike — I join you in the “mixed emotions” response regarding the analysis of 15-20 year old studies with MSC transplants.  Sounds great and important and promising, and WTF with the pace of follow-up?  What’s being done, or what can we do, towards turning this into available treatment?  These are not rhetorical questions — I’d like to know how to find answers and take steps!