About Multiple Sclerosis

Multiple Sclerosis is an unpredictable and often disabling disease which involves the body’s immune system which begins attacking the central nervous system (CNS), consisting of the brain, spinal cord, and optic nerves.

This abnormal immune system causes inflammation which damages the myelin sheath (think insulation of a wire), the special cells that create more myelin, and the nerves themselves. When the nerves and insulation are damaged the signal from the brain can ‘short-out’ which will alter and even stop the signals from the brain getting to a particular system in the body. When myelin and nerves are damaged, a scar or lesion forms. This is where the name Multiple Sclerosis comes from; the multiple sclerae (scars) in the brain and spinal cord.

There are four different types of MS. Clinically Isolated Syndrome is if there is a singular attack or demyelinating event. Most CIS patients develop into either RRMS or PPMS. The most common is Relapsing Remitting MS, which is characterized by relapses, or attacks, followed by a period of remission. There are two types of Progressive MS: Primary Progressive and Secondary Progressive MS. These subtypes are characterized by a continual worsening of symptoms without periods of remission. MS is often called the snowflake disease, because it affects everyone so differently. This is largely dependent on the location and amount of lesions in the CNS.

About HSCT

Autologous Hematopoietic Stem Cell Transplantation (aHSCT or HSCT) is a stem cell transplant utilizing the patients own stem cells. The goal of HSCT for MS is to reset and restart the patient’s immune system so that it no longer attacks the brain and spinal cord.

This treatment was pioneered by a few international hematologists, as well as a physician named Dr. Burt (Northwestern University) in the United States. In 2019, Dr. Burt published his clinical trial which put HSCT up against the best available pharmaceuticals, the results were astounding. After five years, 95% of patients with highly-active Relapsing Remitting Multiple Sclerosis who underwent HSCT had no disease activity. At ten years, the number is closer to 90% efficacy.

There are two types of HSCT: nonmyeloablative and myeloablative. Both of these treatments utilize a patients own stem cells and a chemotherapy regimen to reset the immune system. The biggest difference between the two is that nonmyeloablative HSCT destroys all of the free lymphocytes (immune cells) in the patients bloodstream, but does not destroy their bone marrow. Myeloablative HSCT utilizes a harsher chemotherapy regimen to destroy not only the patients lymphocytes; but the bone marrow as well. Nonmyeloablative HSCT is like restarting and updating your computer, where myeloablative HSCT is resetting your immune system to factory settings. Which will, in theory, delete any ‘bugs.’ You can read more about what the process actually looks like here. Or be a real team player and hit the Subscribe button and you will get an in-depth look at exactly the process is like.

About Aaron Monheim

Aaron is the 34 year old husband to Whitney and father to Sloan. He was diagnosed with an aggressive course of Relapsing Remitting Multiple Sclerosis in 2019 changing his, Whitney and Sloan’s lives forever. Aaron has been on multiple DMT’s (Disease Modifying Therapies, not the fun Joe Rogan DMT) which have been unable to halt or even slow down his aggressive course of RRMS. Aaron walks with a cane around 30% of the time and currently has an EDSS of 3.5. His symptoms include a foot drop, numbness in all four limbs, proximal weakness in the left arm and leg amongst other physical and cognitive difficulties.

Stay up-to-date

You won’t have to worry about missing anything. Every new edition of the newsletter goes directly to your inbox.

Join the crew

Be part of a community of people who share your interests.

To find out more about the company that provides the tech for this newsletter, visit Substack.com.

Subscribe to Referred and Denied

You want to motivate me? Tell me 'no.'

People