John Lopynski
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I have burning pain in my legs and it is worse when sleeping. It got very bad so I had two epidural shots in my lumbar spine and that helped. I take THC and CBD orally prior to bed as well as use CBD oil on the sides of my legs. I have also started to use magnesium oil on my legs and elsewhere where there are no symptoms. It may be helping as well. Good luck and God bless.
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I would also like to know how best to acquire Ammonaps in order to replicate the AMX 0035 trial. Is this by prescription and has there been any side effects?
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I was diagnosed with ALS in September of last year. Like many PALS I immediately started a structured diet and detox regimen. I did this so that I could then spend most of my time focusing on mind-body healing. I am a firm believer that the mind can heal the body and that meditation is the tool that will allow this to happen. I believe as many preach that if you believe that you are already healed that the mind will send signals to the body. This is a difficult practice and takes time. Much of this is getting your mind to focus on what you will feel like when healed. There are many meditations on this. I use the Space meditation from Joe Dispenza. I also have the Calm app.
I then determined this was not enough for me. I am Catholic and feel I needed a meditation that connected me more to God. I bought the app Hallow and use it every day. I tell my kids that I “cry with God every day”. For those that are Christian I suggest Hallow. There is a section on Saints and their prayers that will speak to you. The Intro itself is powerful.
I hope that this might help some of you especially during these difficult times and am interested in your experience.
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Hi Karen. So it looks like Ibudilast has improved your symptoms, is that correct? How long have you been taking it? Thanks
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Hi Martino. After 5 months are you seeing improvement? Thanks
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I have a question about fasciculations. My symptoms started with left leg muscle weakness and numbness in December 2018. Right leg also had minor weakness and denervation. I ended up having minimally invasive back surgery March 2018 as all surgeons thought I had nerve compression as my MRI showed spinal stenosis. It was only after surgery did I start to see fasciculations in both legs. I thought the fsciculations were my nerves getting better. After an EMG in September I was given a presumptive diagnosis of ALS.
My question is do fasciculations typically come first and then weakness/atrophy? If so then my my surgery may have been my ALS trigger.
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I was diagnosed September 20th, 2019. My first symptom was in December of 2018 when my left leg became somewhat numb and weak. The ortho surgeons and neurosurgeons thought is was my spine and so I had minimally invasive back surgery in March.  The surgeon admitted he missed decompressing my nerve roots so I still have numbness in my left leg which has gotten weaker. I use a cane today due to the left leg. I have a few questions. Has anyone used a vibration machine that you stand on? I was given a vibrating massage machine that you can stand on and it vibrates at a high speed. It is called the Rejuvenator Plus. I was told that vibrations help muscles. Any experience with this?