How Linda Halted Her Primary Progressive MS and Journeyed Back from EDSS 6.5
The clinical management of primary progressive multiple sclerosis (PPMS) often presents a significant challenge due to its characteristic relentless progression. This case study details the remarkable 11-year sustained halt in disease progression in a patient diagnosed with PPMS, accompanied by evidence of lesion load reduction following an experimental treatment protocol.
For those navigating the often-unyielding path of primary progressive multiple sclerosis, stories of genuine progress can feel like a distant dream. Yet, Linda’s journey offers a powerful testament to the possibility of rewriting that narrative. Diagnosed in 2004 at age 40, after experiencing neurological symptoms since ninth grade, Linda faced the relentless advancement of PPMS, eventually becoming wheelchair-dependent with an EDSS score of 6.5.
Linda experienced neurological symptoms since adolescence. Her clinical course led to significant disability, reaching an Expanded Disability Status Scale (EDSS) score of 6.5 at 40, necessitating wheelchair use. Linda’s medical history was already complex, marked by over 20 surgeries for conditions ranging from endometriosis and knee issues to RSD and back problems, compounded by injuries from a car accident. Following a CCSVI procedure in Costa Rica, Linda sought a different approach and arrived at Somata Genesis in India for experimental stem cell treatment.
In 2013, Linda underwent an experimental treatment at Somata Genesis in India, adhering to a specific inclusion criterion. The protocol involved a cerebrovascular brain preconditioning phase followed by the administration of multipotent cells and neurotrophic growth factors. Notably, within days of initiating physiotherapy post-treatment, the patient demonstrated significant functional improvement, transitioning from wheelchair dependence to the initial stages of independent ambulation. Within days of commencing physiotherapy, this remarkable shift enabled Linda to take her first unaided steps – a powerful symbol of her burgeoning hope and a victory celebrated with a visit to Snehalaya, a home for differently abled children in Pune, India, where she left her wheelchair behind.
Over the subsequent 12 months, Linda’s disability level progressively decreased, stabilizing between EDSS 1 and 1.5. Longitudinal MRI data from baseline (2013) to 2022 revealed a cessation of PPMS progression and evidence of a reduction in lesion volume, findings that deviate from the typical progressive trajectory of this disease. Her recovery garnered little media attention in 2013 and was met with skepticism back home, where clinicians initially questioned the validity of her progress.
Currently, more than 11 years post-treatment, Linda maintains a stable EDSS score below 2. Her pre-treatment symptom of severe head pressure has resolved, with current symptoms limited to intermittent, mild sensorimotor disturbances in her extremities. Her maintenance medications include Baclofen, Coversyl, and as-needed migraine medication.
Ongoing research efforts will focus on analyzing Linda’s most recent MRI findings in relation to her persistent migraine symptoms attributed to the car accident, investigating potential correlations with intracranial pressure. This research aims to contribute to a deeper understanding of brain-vascular dynamics in the context of MS.
Further details regarding the patient’s experience can be found in a previously conducted interview by Shaun Salen.
A short video documenting the patient’s functional improvements following the treatment in India is available at https://www.facebook.com/share/v/16S7wqjGTx/
@highlight This case highlights the potential for alternative therapeutic approaches to impact the course of PPMS and underscores the need for continued research into innovative strategies for managing this challenging neurodegenerative condition.