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John Lopynski replied to the topic Pain management and ALS in the forum A Forum for ALS Caregivers 1 year, 5 months ago
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…[Read more]
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Kathryn F. Kennedy and
John Lopynski are now friends 2 years, 9 months ago
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Amanda and
John Lopynski are now friends 2 years, 9 months ago
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John Lopynski replied to the topic Ibudilast (Ketas) in the forum Research Topics 3 years, 1 month ago
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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John Lopynski replied to the topic Tips for Self-Isolation During Quarantine in the forum Coronavirus (COVID-19) and ALS 3 years, 2 months ago
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 man…[Read more]
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John Lopynski and
Dagmar Munn are now friends 3 years, 2 months ago
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John Lopynski replied to the topic Ibudilast (Ketas) in the forum Research Topics 3 years, 5 months ago
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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John Lopynski replied to the topic Ibudilast (Ketas) in the forum Research Topics 3 years, 5 months ago
Hi Martino. After 5 months are you seeing improvement? Thanks
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John Lopynski started the topic Ibudilast (Ketas) in the forum Research Topics 3 years, 5 months ago
The recent news that Ibudilast will help PALS early in the disease has made me consider purchasing Ibudilast overseas since it has been sold in Japan and Europe for some time. Does anyone have experience doing this and if so what has been the outcome? Thanks
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John Lopynski replied to the topic Do you experience muscle twitching? in the forum Living With ALS 3 years, 7 months ago
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 di…[Read more]
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John Lopynski replied to the topic Exercise and ALS in the forum Living With ALS 3 years, 7 months ago
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…[Read more]
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John Lopynski became a registered member 3 years, 7 months ago
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Hello John, 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 John, and welcome to the ALS forum. I’m Amanda, one of the co-moderators. Thank you for joining the ALS forum. Please take a look at the topics and ongoing discussions. You are invited to join in, comment, ask questions to our members and/or post discussion topics. If there is a topic you would like us to post, just reach out and let us k…[Read more]
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