ALS News Today Forums | John Lopynski | Activity https://alsnewstoday.com/forums/members/lopynski/activity/ Activity feed for John Lopynski. Mon, 20 Apr 2026 13:08:33 -0500 https://buddypress.org/?v=2.19.0 en-US 30 hourly 2 0f56c8102a0395e1dc7e57ad6df783b5 John Lopynski replied to the discussion Pain management and ALS in the forum Caregivers and Family ​ https://alsnewstoday.com/forums/forums/topic/pain-management-and-als/#post-21112 Thu, 09 Dec 2021 22:31:47 -0600 Reply to Pain management and ALS

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… Read more

]]> dd323ee1c03bb3ec4c34e9e95f35b6e1 John Lopynski replied to the discussion Ibudilast (Ketas) in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/ibudilast-ketas/#post-15134 Sat, 18 Apr 2020 15:44:52 -0500 Reply to Ibudilast (Ketas)

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?

]]> 7b6564e28b4d09454582692a13ec90ad John Lopynski replied to the discussion Tips for Self-Isolation During Quarantine in the forum COVID-19 and ALS https://alsnewstoday.com/forums/forums/topic/tips-for-self-isolation/#post-14986 Sun, 29 Mar 2020 17:21:14 -0500 Reply to Tips for Self-Isolation During Quarantine

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… Read more

]]> ff3d8f62ecd7702efd0827f101057e1e John Lopynski and Dagmar are now connected https://alsnewstoday.com/forums/activity/p/5435/ Sat, 28 Mar 2020 20:01:30 -0500 0 0c6a02fa7eee22a53cf30c9998da37d3 John Lopynski replied to the discussion Ibudilast (Ketas) in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/ibudilast-ketas/#post-14094 Thu, 26 Dec 2019 15:38:02 -0600 Reply to Ibudilast (Ketas)

Hi Karen.  So it looks like Ibudilast has improved your symptoms, is that correct?  How long have you been taking it?  Thanks

]]> ea6500bf4ae82c31f41755467e520983 John Lopynski replied to the discussion Ibudilast (Ketas) in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/ibudilast-ketas/#post-14067 Fri, 20 Dec 2019 16:12:07 -0600 Reply to Ibudilast (Ketas)

Hi Martino.  After 5 months are you seeing improvement?  Thanks

]]> cb68a98296019d77929e279383212bca John Lopynski started the discussion Ibudilast (Ketas) in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/ibudilast-ketas/ Wed, 18 Dec 2019 17:19:49 -0600 Ibudilast (Ketas)

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

]]> 17ae5e260db9cfe5e603e9273ea45e92 John Lopynski replied to the discussion Do you experience muscle twitching? in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/do-you-experience-muscle-twitching/#post-13673 Sun, 03 Nov 2019 17:29:03 -0600 Reply to Do you experience muscle twitching?

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… Read more

]]> 0af2c922582a078c8bad99e8f93e5ca9 John Lopynski replied to the discussion Exercise and ALS in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/exercise-and-als/#post-13672 Sun, 03 Nov 2019 17:20:54 -0600 Reply to Exercise and ALS

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… Read more

]]> 79c0faf71de09d44974dadddb066f423 John Lopynski became a registered member https://alsnewstoday.com/forums/activity/p/3236/ Tue, 29 Oct 2019 16:27:21 -0500 2