In a recent live Q&A session, Verita Neuro’s Global Medical Director, Dr. Nasir Majeed MBBS, joined Patient Representative Vea Gaygon to discuss ALS and MND, covering causes, symptoms, diagnosis, treatment options, and realistic expectations for recovery. The session also addressed specific viewer questions about eligibility, timing, and long-term outlook.
Meet the Doctor
Dr. Nasir is Verita Neuro’s Global Medical Director, with extensive experience treating patients with spinal cord injuries and neurodegenerative conditions, including ALS and MND.
Understanding ALS and MND
What is ALS, and how does it relate to MND?
Dr. Nasir: ALS, or Amyotrophic Lateral Sclerosis, is part of a larger group of conditions called Motor Neuron Diseases, which is any neurological condition involving the upper or lower motor neurons. ALS is the classic and most aggressive adult-onset form, involving both upper and lower motor neurons. Its exact cause isn’t known, but most of the scientific community believes it’s predominantly genetic. In about 10% of patients, the affected gene is identified; in the remaining 90%, doctors believe a genetic predisposition, combined with certain lifestyle or environmental exposures, triggers neuroinflammation and neurotoxicity in the brain and spinal cord, leading to the death and loss of motor neurons.
What happens in the body as the disease develops?
Dr. Nasir: There are two subtypes. Motor-onset ALS initially affects the upper or lower body limbs before progressing to affect speech, swallowing, and eventually respiratory function. Bulbar-onset ALS, which is the more aggressive form, begins with speech and swallowing difficulties, then moves to respiratory function and, ultimately, limb motor function as well. Depending on the subtype and stage, symptoms typically include motor weakness, speech and swallowing difficulty, and loss of fine and gross motor skills; in moderate to advanced stages, patients also lose respiratory function. Prognosis after diagnosis is typically two to five years.
Why do some countries call it ALS and others MND?
Dr. Nasir: This is especially true in Europe. In the U.S., doctors usually specify the exact subtype, such as ALS, PLS (primary lateral sclerosis), SMA, progressive bulbar palsy, or spastic paraplegia. In most European countries, the diagnosis isn’t broken down as specifically, so it’s generally labeled MND, which, in most cases, is actually ALS.
ALS and MND Causes and Risk Factors
Is ALS always genetic or inherited?
Dr. Nasir: About 10% of cases are genetic, or familial, and most involve a mutation in the SOD1 gene. The remaining 90% are called sporadic, without a strong family history or known mutation, though most doctors and scientists still believe a genetic component is likely involved.
As for triggers, most patients have no specific toxic or occupational exposure, though I have seen a slightly increased risk in patients who worked in mines or certain chemical industries, though there’s no strong established link between occupational exposure and an ALS diagnosis. Ultimately, in about 90% of cases we understand the disease’s pathophysiology, like the toxins and mechanisms, but not the specific root cause.
ALS and MND Symptoms, Progression, and Diagnosis
What are the early symptoms?
Dr. Nasir: In motor-onset disease: muscle weakness, muscle wasting, loss of fine and gross motor skills, poor balance and coordination, and muscle fasciculations (twitching). In bulbar-onset disease, the first symptoms are usually loss of speech and swallowing function, while limb strength remains close to normal at first. As the disease progresses, it eventually affects the respiratory muscles, so patients may need non-invasive ventilation initially, and later a tracheostomy with invasive ventilation. Many patients also lose the ability to speak and swallow altogether and require a feeding tube.
Why can ALS/MND be difficult to diagnose?
Dr. Nasir: In many patients, diagnosis is fairly straightforward, which is an EMG (electromyography) study, combined with medical history and clinical findings, is usually conclusive. Even when we can’t specify the exact subtype, we can usually confirm a motor neuron disease. That said, diagnosis can be more complex in some patients, since certain symptoms overlap with conditions like Lyme disease, other inflammatory disorders, or paraneoplastic syndrome. Still, in the majority of patients, diagnosis is achievable.
Does the disease progress the same way for everyone?
Dr. Nasir: No, progression is extremely unpredictable. Some patients have a rapid onset that then stabilizes for a period, sometimes years, before progressing again. Others experience a slow, steady, continuous decline.
What changes should patients and caregivers report right away?
Dr. Nasir: Any new muscle weakness, fasciculations, or loss of speech or swallowing function should be reported immediately, especially loss of grip, fine motor skills, balance, or coordination. A history of falls is also an important warning sign.
ALS and MND Treatment Options
Can any current treatment stop or reverse ALS/MND?
Dr. Nasir: Treatment falls into two categories. The first is FDA-approved medication. Currently Riluzole and Edaravone are the two FDA-approved drugs, both are antioxidants that reduce the oxidative stress part of ALS’s disease pathology, offering some neuroprotection and extending the lifespan of motor neurons. Riluzole is the most commonly prescribed, though its efficacy is limited, on average adding two to six months of life expectancy.
The second category is alternative treatment, including Stem Cell treatment, which is an area we specialize in. Stem Cell treatment also has antioxidant, anti-inflammatory, and anti-neurotoxicity properties, but its regenerative effects mean it can slow disease progression and, to some extent, reverse symptoms.
How does Stem Cell treatment fit alongside medication like Riluzole?
Dr. Nasir: Most patients remain on Riluzole from the day of diagnosis and should continue it as their primary treatment. Stem Cell treatment for ALS can be taken alongside it, there are no adverse interactions, since Riluzole is primarily antioxidant and doesn’t interfere with Stem Cell treatment in any negative way. The two treatments can proceed at the same time.
How exactly does Stem Cell treatment help with ALS/MND?
Dr. Nasir: Stem Cell treatment works through three main mechanisms. First, its antioxidant, anti-inflammatory, and anti-neurotoxicity properties reduce inflammation and oxidative stress, supporting motor neuron survival. Second, it enhances growth factors like nerve growth factor BDNF, along with anti-inflammatory cytokines in the brain and spinal cord, which further protect motor neurons and increase their survival. Third, it stimulates the release of the body’s own resident neural Stem Cells in the brain and spinal cord.
It’s a common misconception that injected Stem Cells directly become functional motor neurons. This only happens under strict laboratory conditions, where the right proteins and controlled environment enable differentiation. In the body, Stem Cells don’t directly translate into motor neurons. Instead, they promote regeneration and protect existing ones. So while Stem Cells have regenerative properties, the process isn’t as simple as direct replacement.
MND and ALS Treatment Eligibility and Timing
Who is a good candidate for Stem Cell treatment?
Dr. Nasir: A few factors we use to determine if someone is more likely to respond to Stem Cell treatment. Early-onset ALS, such as when diagnosed in the late 20s or early 30s, tends to be more progressive. Familial ALS with a confirmed genetic mutation, and bulbar-onset cases, also tend to progress faster. Most patients do qualify for Stem Cell treatment, though responses vary. The exception is patients in very late-stage disease, those who have completely lost the ability to speak and swallow, and are on a feeding tube or mechanical ventilator, for whom it may be too late to see meaningful recovery.
Is there a most suitable stage of the disease to pursue treatment?
Dr. Nasir: Sooner is always better. There’s no fixed window, but as soon as someone is diagnosed with a motor neuron disease, they should take it seriously because every day or week, motor neurons are lost and are almost impossible to replace. The priority is protecting whatever motor neuron function remains, slowing the disease, and increasing life expectancy. Many patients come to us at a very early stage, sometimes with only minor symptoms; some with a strong family history are even diagnosed proactively, through genetic testing, before symptoms appear.
ALS and MND Rehabilitation and Supportive Care
What role does rehabilitation play in treatment?
Dr. Nasir: Rehab is very important as it helps guide the Stem Cells after injection. Physical therapy essentially forces the cells toward the areas that need it, supporting what’s known as the “homing” mechanism, which is when Stem Cells migrate through the body during the first four to six months after injection. We provide rehab during treatment and recommend patients continue for four to six months afterward.
Unlike conditions such as stroke or spinal cord injury, we don’t recommend very aggressive rehab for ALS patients because aggressive rehab causes loss of muscle fibers that, given the underlying motor neuron disease, is difficult or impossible to recover. So we focus on the quality of rehab rather than the quantity. One treatment we offer is electromagnetic stimulation that includes using transcranial magnetic stimulation for the motor cortex and peripheral electrical stimulation for the muscles, and the central nervous system.
Is there equipment or home changes that can help?
Dr. Nasir: Many patients arrive already on a combination of anti-inflammatory and antioxidant supplements recommended by their primary care physician or neurologist, which is worth exploring. That said, it’s not a good idea to overwhelm the body, very high supplement dosages can overwhelm the immune system and become pro-inflammatory rather than anti-inflammatory. Physical and occupational therapy, speech therapy, and respiratory or chest physiotherapy are also valuable, alongside electromagnetic stimulation where possible.
Realistic Expectations with an ALS Diagnosis
What should patients expect from Stem Cell treatment?
Dr. Nasir: Motor neuron diseases are aggressive, and in most cases we don’t even know what causes the disease, so treatment isn’t focused on curing the disease, but on slowing its progression. It’s realistic to expect the disease to slow significantly, sometimes halting for months or years. Some reversal in function has been seen in many patients, though this doesn’t happen in every case we treat. Realistically, a slower or halted disease progression is the more likely outcome.
Preparing for a Consultation
What should patients prepare before a consultation?
Dr. Nasir: An EMG (electromyography) is the most important tool for confirming diagnosis. Reports can range from a single page to as many as ten, and they also help rule out other conditions and narrow down the diagnostic criteria. If there’s a strong family history, genetic testing is useful as well.
How does the evaluation process work?
Vea: We ask for the EMG report along with an online medical form covering more detail about the patient’s condition. Once submitted, our patient representative prepares a case folder for the medical team to review; if the patient qualifies, we follow up to arrange a consultation. The process typically takes just a few days, with a consultation possible within about a week.
ALS and MND Live Q&A
Does muscle twitching always mean ALS/MND?
Dr. Nasir: It’s not an absolute diagnostic criterion, but it is a common initial symptom, indicating deteriorating motor neuron health.
Can ALS/MND be cured or completely reversed?
Dr. Nasir: We don’t promise a cure or complete reversal. The realistic goal is to slow disease progression and improve quality of life.
What’s the most progress a patient has made with Stem Cell treatment?
Dr. Nasir: Some patients have regained a significant amount of muscle mass, which is rare but has happened. In past cases patients who had lost considerable muscle mass actually regained it after treatment. Disease progression has also been halted for several years in some cases, up to three or four years after treatment. This isn’t guaranteed, and it’s possible some patients see no response at all, but there have been cases of both halted progression and reversal in their physical condition.
If I have ALS, what’s the risk of passing it to my children?
Dr. Nasir: For familial ALS, such as with an SOD1 gene mutation, there is a significant possibility of passing the disease on to children. For sporadic ALS, the risk is much lower, though it can still depend on whether a dominant gene is involved, in which case the chance could be as high as 50%.
Closing Message
Dr. Nasir: An ALS diagnosis can be as devastating as a cancer diagnosis. Many patients have never even heard of the condition before being diagnosed and immediately face difficult questions about prognosis and life expectancy. It is, indeed, a serious condition with a challenging prognosis and limited life expectancy. However, options like Stem Cell treatment can help manage the disease and increase overall life expectancy. Anyone diagnosed with a motor neuron disease should look into it as a possible option.
The above is not a verbatim transcript of the live session. Some comments have been condensed or lightly edited to improve reading flow while preserving the original meaning and level of detail.
