Johnny5
Forum Replies Created
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I brought this subject up years ago when Dr. Bedlak was in a Zoom meeting with Everything ALS. I also raised the issue multiple times with other researchers in that forum, as well as on social media.
It is nice to see that someone is finally looking into this.
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In re: Long-term survivors should be studied so they could note differences and maybe find something in genetics or at the cellular level that would help fast progression to slow, resulting in longer survival of all pALS.
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I had a back injury in 1979. It got worse over the years and in 2014 was crippling. I went to the MD, they sent me to PT, and then I ended up w/foot drop. The VA did a 4-level lumbar fusion (Dec 2015) to fix it, but it did not. In Apr 2015 (4 months after foot drop) I started fasciculations/cramps. The VA neurologist said I had BFS. Then I began getting weakness in my L/Leg and fasciculations spread to my R/Leg. In 2016/2017, the VA shoved drugs at me like candy, but they did no good. I went outside the VA to a neuromuscular specialist at an MD clinic. Over the next 2 years, he did everything in the book, and finally I was diagnosed w/ALS. First diagnosis was Oct 2019, VA confirmed it May 2021. And here I am today, a 10-year survivor.
My brother did not get so lucky; he was diagnosed in October 2015, and on January 6, 2016, he left us. We are polar opposites in that regard.
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I am not sure about up/down days. My personality type is Ambassador, and I usually find it easy to distract myself from sad or negative thoughts. I get on forums and work with Veterans, AA and NA groups, and ALS forums. It takes me out of myself, and it feels good if I can help others.
My tip is for Lion’s Mane Mushroom (LMM) supplements. I started taking them in 2017 while pursuing my BA in Psychology. I was introduced to them as a nootropic, and they seemed to work well. My studies showed that LMM stimulates BDNF (brain-derived nootropic factor) and NGF (nerve growth factor). BDNF increases the number of synaptic connections in your brain, which contributes to an increase in IQ. The more connections, the better off you are. The it “in a nutshell” is that it is active in the frontal lobe and capable of doing the same thing in the corticospinal tract, where motor neurons are. NGF stimulates nerve growth in the muscles. When a muscle becomes denervated, the body naturally creates NGF, which stimulates NGF production, aiding in the growth of nerves from adjacent innervated muscles into the denervated muscle. The natural process already exists; LMMs increase the amount of NGF.
LMM can slow ALS IMO. ALS Unraveled studied it, and the results are that it needs more study. Dr. Bedlak from Duke University is an icon in ALS research. I get 1800 mg capsules from Amazon (Toniq brand, 120 per) for around $25. I20 capsules last 60 days, I take 2/day.
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My Brother passed from ALS in 2015. I was tested for genetic links after I was diagnosed, but no genetic links were identified. I have 18 C9orf72 repeats, but this does not qualify as an ALS trigger (32 repeats).
The ALS Clinic registered me as Familial ALS because of my Brother. Research into genetic links remains limited. They will likely find many more related genes to ALS in the future.
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- Where in the world are you from?
Orlando since 1984, native of Colorado - When were you diagnosed?
First symptoms 07/2015 verified by abnormal EMG/NCV
First diag 10/2019, confirmed 07/21 - Are you on any treatments?
Radicava, Lion’s Mane Mushroom Supplements - What are your favorite activities?
Family, Helping AA/NA and ALS, Gaming, Gardening - Do you have a personal motto?
Never quit - What is the best place you’ve visited?
The Vatican. It is a work of art from top to bottom.10-year survivor 07/2025
- Where in the world are you from?
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I was 56.
My first symptom was twitching/fasciculations, verified by EMG in Jul 2015.Fascics are muscles waiting for a signal, I was told. So they will keep happening until the muscle is gone, I assume. The brain signals the muscle to contract but fails to say stop. So the muscle keeps doing it.
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I started with an AFO in 2015. They upgraded me to a carbon steel one in 2016. By 2017, the AFO was retired, and the VA provided a KAFO that goes from my hip to my toe. The VA gave me a nice aluminum frame with leather straps, and I used it for a while, but it became too heavy, and I quit using it in 2019. I found that dragging my toe using a cane or a shopping cart when I went out worked okay.
Recently, I was fitted with an ultra-light carbon steel KAFO. I pick it up on 30 Dec, and hope it works out. This one weighs less than 2 pounds and keeps my knee from kicking out when I am at the end of my foot and leg swing forward.
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I am also in a warm climate here in Florida, but the winter is still an issue. So is my circulation because loss of muscle slows the blood flow in the limbs, making them feel cold in the summer or the winter. I got a pair of hand warmers and socks recharged by USB, which greatly help. My feet get cold then become painful even in the summer! The accessories help a lot.
Veins carry blood back to the heart and lungs to re-oxygenate, and then it is returned by Arteries in a never-ending cycle. As pALS muscles atrophy, the one-way valves are supported by the muscles and tend to become less effective when the muscles atrophy. That makes it harder for the veins to return the blood back up to the heart. It can also make your extremities feel cold.
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I ran into this a few years ago when I asked similar ??s. Lots of pALS chose to forego Tracheostomy, but IMO if you have your facilities and competent care, this solution works (especially if you are not locked in)
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I’ve had a lumbar disc problem since I was 20. It got much worse over the years, but I clenched my teeth and bore it. After 30+ years, it was getting really bad. I went to physical therapy, and the therapist gave me 1 exercise. That exercise caused damage to my nerves, and the therapist ignored the symptoms. So they drug their feet, but after nine months, they got me into surgery for a 4-level spinal fusion. Post-surgery, I had a foot drop. Six months later, I was diagnosed with benign fasciculation syndrome and given an AFO. That was my first misdiagnosis.
The second came a few years later as the foot drop worsened, and I graduated to a KAFO (knee-ankle-foot orthosis). I was referred to a Neurologist again, and they started pumping pills at me, thinking that it was a neuro issue pills would solve. Wrong again.
The third misdiagnosis was that my cervical spine had a problem (degenerative cervical myelopathy). There was little to no room for the spinal fluid to get through because all of the years with my back problem, I had three curves in my spine and had been diagnosed with scoliosis. The doctor said it would also explain the problem with muscle loss in my left arm. They told me I did not have ALS, and I was ecstatic! So, after a five-level fusion in my neck, I would be cured of this. Wrong again.
There was a fourth, but I cannot recall what it was. They are looking at FTD now because I forget a lot of things. I will remember later if I don’t forget again.
The final straw was after a brain CT. The Neurologists noted that the corticospinal tract had problems, and I was finally given a preliminary diagnosis of possible ALS. It took another two years before I got a confirmation (second) diagnosis. Throughout the six years that this took, I went through numerous blood tests, urine tests, a muscle biopsy, and eight NCV/EMGs (all abnormal and showing progression). -
I get a dry mouth on and off; then a leaky mouth at other times. I wish there were a solution.
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There may be something in this. The military trains hard. Football, soccer, basketball, and other sports also require hard training. Long-term physical training in some professions has been noted for higher ALS percentages. Are there any published studies on this information?
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My progression is slow. I had my 1st of 8 EMGs in 07/2015. My next two EMGs were in 2017. I went from an AFO to an KAFO before the VA gave up looking, so I went to a non-VA neuromuscular specialist. It took 2 more years before I got my 1st diagnosis in Oct 2019. Then the VA finally recognized my condition in May 2021 (2nd confirmation).
I think one of the barriers was that the providers I had were clueless about ALS and did not know how to connect the dots. I was misdiagnosed 4 times before 2021.
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I got used to it. 10 years ago on 27 Jul 2015 I got my first abnormal EMG, and over and over I see so many pALS progress much faster than I am. My brother was diagnosed in Oct 2015, he was gone 6 Jan 2016, and I am still walking.
I think a lot about this, like, is this really ALS? Maybe they will unravel some mystery and figure this is a variant of something else or not. But day by day, week by week, month by month, these years go passing by and so are my muscles.
There are around 85 million motor neurons in the human body. I figure my brothers were dying off at a rate of around a million per day. Mine are dying off by the dozens, or maybe a hundred, per day. Nobody is counting. But the specialists at the ALS Clinic know me by name. I keep showing up, and they smile widely when they see me. One day at a time, never quit.
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So what if these are the symptoms of something else?
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I have bounced back and forth from 215 to 230 over several years now. I do nothing special, but it is abnormal for ALS. 10% of us will make 10 years, and 5% will make it over 20 years. Stephen Hawkins survived 52 years, and I know of one Veteran who survived over 60. We all progress at different rates and ways, and while it’s mostly predictable, those of us who are extremely slow can be very unpredictable. They have no idea why we are not progressing as quickly as 90% of people with ALS.
They need to do a deep dive into longevity and see if there is some genetic or other reason why we survive so long. If they could find the cause of longevity and give that to fast-progressing pALS, they could live much longer…much like they have done w/downs syndrome. A child w/DS would be gone in 10-20 years, but today they live into their 50s.
I have pointed this out to several researchers, but the $$ for their research is dedicated to something else. They think its a good Idea, but none of them have taken steps to do the research. If they cannot cure ALS, at least they can make it liveable for the vast majority of us.
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In College, I was researching info on LMM through their library. There are thousands of studies on LMM. You can find many on the NIH site and Google Scholar. A standard Google search linking LMM, BDNF & NGF would provide a large volume of information.
ALS Untangled statement:
“While Lion’s Mane may have neuroprotective,
neurotrophic, antioxidant, and anti-inflammatory
properties that could, at least in theory, potentially
help ALS, there are still no studies in ALS-relevant
cell or animal models, nor in humans with ALS.
Therefore, we do not have enough information to
support the current use of Lion’s Mane for treating ALS We hope to see the validation of its neuroprotective and anti-inflammatory benefits in ALS disease models, which may ultimately lead to clinical trials in PALS.”The actual study by ALS Untangled:
https://www.alsuntangled.com/wp-content/uploads/2024/01/ALSUntangled-73-Lion-s-Mane.pdf
They need further study:
https://pmc.ncbi.nlm.nih.gov/articles/PMC10319848/
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I was diagnosed in Oct 2019. One of the first ways I took Radicava was via a port straight into my chest that had a tube going into my heart. It was a relief when they came out with the oral solution. In essence, I have been on Radicava for over 4 years now. My symptoms began in Jul 2015, so this coming July I will have been a 10 year survivor.
Does Radicava help? There is no way I can be sure, but I would hate to discover that it does help after not taking it for some time. I still have deficits, and my progression is very slow, so I hope that Radicava is partly responsible. They say if it ain’t broke, don’t fix it.
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I do not think they figured it out yet. Couch potatoes put stress on themselves from a lack of physical exercise, maybe? However, the elevated rate of ALS diagnosis in sports and the military is higher than that of potatoes. Traditionally, they suggest that many different things may cause ALS. ALS may not be a single condition, but many different conditions are lumped together with the same symptoms, and they need to be sorted out.
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The elevated level of physical stress experienced by the levels of training may be the trigger. The idea of sports and being a soldier is not my point. It is not the idea that sports cause ALS, but the idea of extreme stress in workouts (long term). Either way, something has to cause the elevated rate of ALS in these specific groups.
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Our body’s homeostasis changes with ALS. As homeostasis diverts energy to heal ALS damage, it decreases energy for other, less important things. Altering homeostasis is a logical way for the body to balance what is necessary vs. what it can compromise that is less dangerous. I think you may have been fighting off psoriasis for a long time.
Psoriasis is thought to be an immune system problem that causes skin cells to grow faster than usual. The loss of muscle and the energy your body uses to increase neuronal sprouting to stave off atrophy is a higher priority than (autoimmune system) psoriasis. The energy your body used to dedicate to increase fighting off psoriasis is less important. I am not a doctor, but the logic seems to be there.
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That could not apply to the military, but it could be so with celebrities. What other links between the different sports could tie them to the military statistics? The strain of hard training is a good possibility.
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This is what my VA Dr suggested (that it was age-related). Then I did some research to check and found that there is some comprehensive research covering this issue. See section 4.4 linked below.
Anomia is the problem I suspect is an issue with a percentage of us pALS.
“Visual anomia or optic aphasia was first described by Freund in 1889 and refers to being unable to name objects presented in visual modality, but able to name the same objects when perceived tactually or when given a verbal definition of their function and use” (from ScienceDirect.com)I have been doing this for 2 “ish” years. The VA has no clue how to diagnose it.
“Recent evidence regarding language disturbances in ALS-FTSD suggests impaired semantic and syntactic processing. Semantic deficits mostly manifest as anomia during confrontation naming or single word comprehension difficulties.”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8065866/
ncbi.nlm.nih.gov
Cognitive and Behavioral Manifestations in ALS: Beyond Motor System Involvement
Amyotrophic lateral sclerosis (ALS) has long been considered to be a purely motor disorder. However, it has become apparent that many ALS patients develop cognitive and behavioral manifestations similar to frontotemporal dementia and the term amyotrophic ...