First Post

My intention, when I started looking more into multiple sclerosis (MS) was to make a grand database to collect and correlate all the data from the studies I read to find a way to fix it myself. However, in researching about it, I couldn’t help but go down the rabbit hole because I’d always find three questions for every answer. Furthermore, with the alterations that come after the initial peripheral autoimmune attack in the CNS, it can sometimes be hard to tell what is a cause or a consequence of the disease. This is my long winded way of saying the database has fallen behind. I figured I could use this platform to kind of work it out as I go along. 

MS is a pretty unique disease due to its heterogeneity, which pretty much just says that it’s different for everyone depending on the location of the lesion, extent of the damage, and what repairs were made, if any. It can affect any part of your body, like the electrical system in your car and MS is a rat infestation that likes to chew on the wires. It might start, but the AC doesn’t work and the radio only plays AM. My symptoms used to markedly improve around 8:00 PM every night and still do somewhat, but I see others whose symptoms deteriorate at night. The one common denominator between all seems to be temperature sensitivity, which makes sense as the disease causes myelin loss which acts an insulating factor on the nerves to protect from temperature fluctuation. I know when I get a fever I’m pretty much out of commission and when I got COVID last summer, the first five days in the hospital I had a fever of 103 I couldn’t shake and was pretty much paralyzed my neck on down. The first few years after I was diagnosed I had Lhermitte’s sign, where when you look down it feels like an electric shot shoots up your spine. I remember thinking to myself what kind of jacked up disease is this to make you feel something like that. Back in those days strange sensations like that would happen pretty regularly, sometimes for a few hours, days, or even months or longer and then just suddenly just disappear. One day I was at my desk and the strangest electrical feeling, like a thread of copper wire zig zagging around inside the left tri-cep down to the elbow that triggers that pain you get moment you hit your funny bone and then this cool burning feeling would overtake the entire left side. This one never went away, It happens in both sides now, but at least the cool burning feeling doesn’t happen as much. Anyhow, the point is how different the symptoms can be even though it’s the same pathological mechanisms that occur.

The most common line in every MS study is that it’s caused by a combination of genetic and environmental factors. It seems the human leukocyte antigen (HLA)- DRB1*1501 and HLA-B07 alleles are key genetic factors, while the Epstein-Barr Virus (EBV), low vitamin D levels, and smoking are key environmental factors. The HLA system is involved in determining ‘self’ from ‘foreign’ antigens. EBV can alter the immune system in ways that favor autoimmunity, especially in cases with high viral loads. Low vitamin D levels or polymorphisms in the vitamin D receptor (VDR) likely compound the other factors. Smoking increases DNA alterations and toxin exposure.

As this is my first post and the name of the site implies I have some do-it-yourself ideas that can help out if you have secondary progressive multiple sclerosis (SPMS), I guess I should lay something out. On top of the usual exercise, stress relief, good sleep, healthy plant based diet, plenty of water, and laying off the booze, junk food, salt, sugar, etc. I have a few ideas. Number one is to start with what I just mentioned,, me too. One thing I take that has a noticeable difference to me is N-acetylglucosamine (GlcNAc). It’s a rate limiting factor for N-glycan branching on cells. N-glycan branching interacts with galectins to control cell surface receptor endocytosis and signaling to control cell functions. GlcNAc can help reduce the autoimmune response and promote remyelination. It’s available as a supplement, but the effects are dose dependent that may cause a little GI discomfort in some. I personally take a tablespoon per day in powder form which is equivalent to 10 to 12 grams.

One major cause for disease progression in SPMS is the presence of iron rimmed lesions (IRLs), aka smoldering lesions. They are just what the name implies, lesions with macrophages surrounding the rim that release ferric (Fe3+) iron to autophagosomes for degradation that then release it as bioactive ferrous (Fe2+) iron. This reacts with hydrogen peroxide (H2O2) released by normal mitochondria respiration that forms highly reactive hydroxyl radicals. These are highly toxic to lipids, causing lipid peroxidation of cellular plasma membranes, organelles, and myelin. This can lead to ferroptosis of the oligodendrocytes that create the myelin sheath in situations with reduced antioxidant glutathione peroxidase. These IRLs continual expansion is just one example of the pathological processes that occur in SPMS.