Only if you don’t want to count muscle function failure as “visible”. Not all PALS have visible fasciculations. And fasciculations can go away in a completely paralyzed muscle. But loss of function is the hallmark of ALS, not fasciculations. As we tell people who have benign fasciculations, twitching is common, nonspecific, and meaningless in the absence of muscle function failure.fasc. are (as far as i know) the only visible element which remind us that als is still here. corect me if i am wrong.
how far can you walk? steps a day? do you have wheelchair/ cruches or so? think that for your respiratory status is cannabis as a vasodilatator/bronchodilatator responsible. for whole status which goes in a form of a "very slow progression" there is one plant you should thank to. what is your fvc? my problems with speech just started, maybe 2 months ago, fvc is 84%. motor center is doing something, i can not simply pronounce anything. just like slow motion movie. strongly recommend further (adjusted!) therapy with cannabis, cause your progression velocity (slow) can be fully stopped. i am searching for a treatment of als with cannabis and can not find anything on internet so i started to learn. from the beginning.I'm still walking but not far. I'm in a lot of pain. I do have atrophy in my legs and hands. My speech is fine and my breathing, which was bad in the beginning, is on a long plateau with my MIP, MEP and SNIP all above normal. ALS doctor noted that the muscles in my back are weakening and contributing to the pain. I can still take care of myself and drive. So I do have clinical weakness but very slow progression.
there are als, ALS, mnd etc, but your seems to be one of the most peculiar i have ever heard of.The reason I bought all my breathing measurement equipment was because I went to four hospitals for comprehensive breathing tests. They all used different parameters. The first test I had done in December 2014. It said my FVC was 68. It was at a pulmonary doctor's office. Then, a month later, Mayo said it was 80. Two other tests, two other numbers. My best guess is that my FVC was always below normal because I have always been a chest breather and my total lung capacity was low.
I got professional equipment in late 2016-early 2017. My RT said they are better than the equipment he uses. My MIP, MEP and MVV have always been at or above 100%, even at Mayo, Florida Hospital, and Hopkins. My FVC is all over the place. At home it ranges from 80 - 86, depending on the day and my energy level. I will say there has been a huge learning curve in getting an accurate FVC. I think it has something to do with my anatomy. It's the same lying down as it is sitting or even standing. My SVC is a few points better.
I don't get my exercise by walking although I probably get up to a mile a day around the condo and on the grounds. I have a PWC and a walker but don't need them around the condo or grocery shopping as I can still manage.
I went to a huge mall a couple of weeks ago and I couldn't manage to go as far as I needed. But I figure I walked about a mile throughout that day. After, I found out they rented scooters and I would have done that had I known.
When I'm in the pool I straddle a pool noodle and paddle with my arms. I can do this for 45 minutes. Last year I could do it for over an hour.
My arterial blood gasses have been good with low CO2 and high Oxygen.
I'm feeling better taking the CBD in the morning and at night and plan on adding the THC in the morning, too.
I like to introduce one thing at a time to see if it makes a difference.