Living Beyond the Diagnosis

• The following Blog Post is my opinion and based on my endless research to find some help battling MSA. You will want to discuss with your Medical Team to be certain it applies to you as well.

My most recent findings have led me to focus on Synucleinopathies as the “mechanism” to base my fight for life on. Here’s why:

Breaking Down Multiple System Atrophy and Uncovering its Mechanisms to Stop or Enhance its Effects

Multiple System Atrophy is a type of Synucleinopathy, “Synucleinopathies are a group of neurodegenerative disorders in which the protein alpha-synuclein accumulates abnormally to form inclusions in the cell bodies or axons of neurons or oligodendrocytes.”

How this applies to Multiple System Atrophy (MSA) and the mechanisms to potentially stop its progression, broken down step by step:

1. Synucleinopathies and MSA: Synucleinopathies, are diseases where the alpha-synuclein protein accumulates in an abnormal way. Multiple System Atrophy is a specific type of synucleinopathy. In MSA, this abnormal accumulation of alpha-synuclein particularly affects multiple parts of the nervous system, which is why it’s called “Multiple System” Atrophy.
2. Effects in MSA: In MSA, these accumulations of alpha-synuclein (the inclusions mentioned in the description) are primarily found in oligodendrocytes, which are cells that support and insulate nerve cells. This is somewhat unique because in many other synucleinopathies, like Parkinson’s disease, the accumulations are mainly in the neurons themselves.
3. Symptoms of MSA: Because MSA affects multiple systems in the body, its symptoms can be quite diverse. They often include poor coordination, difficulty with speech, and problems with autonomic functions like blood pressure control and bladder function. I am suffering from the latter.

Now, regarding mechanisms to stop, or enhance, the progression of MSA:

1. Current Treatment Approaches: As of now, there is no cure for MSA, and treatments mainly focus on managing symptoms. However, researchers are actively looking for ways to stop or slow down the progression of the disease.
2. Research on Stopping Progression:
   • Targeting Alpha-Synuclein: Since the abnormal buildup of alpha-synuclein is central to MSA, many research efforts focus on finding ways to reduce or prevent this buildup. This includes developing medications that can either break down these accumulations or prevent them from forming in the first place.
   • Neuroprotective Strategies: These are treatments aimed at protecting nerve cells from damage. They might involve drugs that reduce inflammation in the brain or enhance the survival of nerve cells.
   • Stem Cell Therapy: Some researchers are exploring the use of stem cells to replace or repair the damaged nerve cells in MSA.
   • Clinical Trials: There are ongoing clinical trials testing various drugs and therapies that might slow down or halt the progression of MSA. These trials are crucial for understanding the disease better and finding effective treatments. Below is a list of some I am considering now:
     1. https://clinicaltrials.gov/study/NCT05634876
     2. https://classic.clinicaltrials.gov/ct2/show/NCT04680065 or https://clinicaltrials.gov/study/NCT04680065
     3. https://clinicaltrials.gov/study/NCT05274568
     4. https://clinicaltrials.gov/study/NCT04165486
     5. https://clinicaltrials.gov/study/NCT02795052
     6. https://clinicaltrials.gov/study/NCT05526391
     7. https://www.clinicaltrials.gov/study/NCT05923866
   • NOTE: This is the study I traveled to Mayo Clinic to participate in, but was ultimately denied entry to, because my past back fusions having caused scar tissue and bone growth that impeded the injection site for the Stem Cells. https://www.mayo.edu/research/clinical-trials/cls-20523723 *They could not inject at another site on spine, because they only applied to FDA for the L1 – L3 region.
   • Also starting to research “Red Light” therapy as an alternative. https://occupationaltherapybrisbane.com.au/red-light-therapy-for-neurological-conditions-explained/#:~:text=Enhances%20Brain%20Cell%20Functioning%2D%20Energy,the%20cells%20in%20your%20brain
3. Lifestyle and Supportive Care: While these don’t stop the progression of MSA, maintaining a healthy lifestyle, physical therapy, and supportive care can help manage symptoms and improve the quality of life for those affected. https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet-msa-patients/?utm_campaign=website&utm_medium=Email&utm_source=Daily+Digest#:~:text=Sprinkle%20freshly%20ground%20flax%20seeds,10%20servings%20per%20day6

In summary, Multiple System Atrophy is a type of synucleinopathy where the abnormal accumulation of alpha-synuclein in oligodendrocytes leads to diverse symptoms affecting multiple body systems. While there is no cure yet, ongoing research focuses on understanding and targeting the underlying mechanisms, with the hope of finding ways to stop or slow its progression.

With my Medical Team, we have spent the better part of the last 6-8 months, focused on the Autonomic Dysfunction, and in particular the Neurogenic Orthostatic Hypotension. The effects to my Autonomic Nervous System were ruining my day-to-day life and causing depression. The nOH was a danger, because of the black outs associated with the massive drops in Blood Pressure. Sometimes as much as 100+ basis points, bottoming out at 57 over UD (Undistinguishable. Yes, that is possible). Here are some follow ups on that:

• https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7951046/
  • https://content.iospress.com/articles/journal-of-parkinsons-disease/jpd230173

Note: The Wikipedia Version for some light nighttime reading https://en.m.wikipedia.org/wiki/Multiple_system_atrophy

Let’s simplify a few terms that might make this post easier to understand:

1. Synucleinopathies: This is a big word, but it’s just a name for a group of diseases that affect the brain and nerves. Think of it like a category of illnesses.
2. Neurodegenerative disorders: These are diseases where nerve cells in the brain and nervous system gradually get damaged or die. This leads to problems with movement or mental functioning. It’s like the wiring in a computer slowly breaking down.
3. Protein alpha-synuclein: Proteins are like tiny machines in our body that do all sorts of important jobs. Alpha-synuclein is a specific type of protein that’s found in the brain. Normally, it plays a role in how nerve cells communicate.
4. Accumulates abnormally: In synucleinopathies, this alpha-synuclein protein doesn’t behave as it should. Instead of doing its job and then going away, it starts to build up or “accumulate” in places where it shouldn’t.
5. Form inclusions: These accumulations of alpha-synuclein can clump together and form what scientists call “inclusions.” Think of it like trash gathering in a room without being cleaned up. These clumps are not good for the cells.
6. Cell bodies or axons of neurons or oligodendrocytes: Neurons are the cells in your brain and nervous system that send and receive messages, like tiny messengers. They have different parts: the cell body is like the main office, and the axons are like long wires that carry messages. Oligodendrocytes are other types of cells that support and insulate these wires. In synucleinopathies, the alpha-synuclein protein clumps up in these parts of the neurons or in the oligodendrocytes, which causes problems.