Alice's Multiple Sclerosis Fund
Donation protected
A brief story about me
Hi everyone, my name is Alice, I’m 26 years old. I was diagnosed with Multiple Sclerosis(MS) 4 years ago. MS is a potentially disabling disease of the central nervous system that can cause damage to the brain and spinal cord. Common symptoms (what we called relapses) include double vision/ blindness, muscle control, sensory problems, difficulty in moving, speech, swallowing etc. Medications can help to slowdown the progression of disability. Unfortunately, my neurologist concluded that my MS has been highly active, as there were increase in symptoms (loss of vision & sensitivity in hands and feet) and signs of disease activity in my brain and spine given that I had been on 2 Disease Modifying Treatments (DMTs). Therefore, I was told to step up to a higher-efficacy DMT, Mavenclad, together with acupuncture treatment, to prevent further deterioration. However, I have to pay 80K out of pocket for one treatment course, which is a huge financial burden to me. ANY DONATION NO MATTER HOW SMALL GETS ME ONE STEP CLOSER TO THE TREATMENT. THANK YOU FOR ALL WHO HAVE DONATED AND CONTINUE TO.
A little more about Multiple Sclerosis(MS)
For those who want to know more about this disease, MS is a lifelong unpredictable disease with no known cure while the cause is unclear. In MS, the immune system mistakes the myelin (neuron coating) in the central nervous system as a foreign body and attacks it. Areas of damaged myelin become scarred (brain/ spinal lesions on MRI) interrupts the communication between the brain and other parts of the body, which results in the symptoms with different degrees of disability.
My MS diagnosis, relapses and treatments
1st relapse－Vision loss
My first symptom was blurred vision in my right eye back in 2015. I thought it was because of migraine as those symptoms were pretty much the same, just that migraine would be gone within a day. Even though it had lasted for a couple of days, I ignored it until I went blind in my right eye and started to have blurred vision in my left eye one week later. I was frightened and went to the doctor. I was diagnosed with optic neuritis. As it is one of the most common symptoms of MS, and often one of the first that people with MS notice, the doctor suspected that I might have MS. However, I didn’t take it seriously after having my vision partially restored. And I’m still experiencing dim, blurred and impaired color vision in my right eye as of today.
2nd relapse－Numbness spread from hand to neck
Seven months later, I had pins and needles in my fingers of my left hand. This spread rapidly from hand to neck. Therefore, I went to emergency. Again, my neurologist strongly suspected that I might have MS, he ordered a number of blood tests, MRI scans and lumbar punctures (spinal tap) to rule out other conditions with similar symptoms.
Finally, I got my official diagnosis in Feb 2016. And I knew that my life would never be the same again.
In March 2016, I was put onto Rebif Beta-1a which was an injection 3 times a week. At the beginning, Rebif worked perfectly well for me, there were no new lesions showed on my first MRI results, which made the painful injection and unbearable flu-like side effects worth it. But luck was not always on my side, there were new lesions appeared on my second and third MRI results, which indicated Rebif was not working, so I was told to move onto a stronger medication.
I have been on Terfidera, which is twice a day orally, since Jun 2019. Good news is no more injection; bad news is…the drug failed again.
3rd relapse－Prickly sensation in my feet
I have been experiencing prickly sensation in my feet since April 2020, MRI results show that my MS disease activity has been highly active, new lesions appear not only on my brain, but also everywhere of my spinal cord. New lesions were still countable for my previous MRIs, but not for this one. Apparently, it’s necessary to move onto a medication that is stronger than Rebif and Terfidera, or I may end up to be in a wheelchair.
I wish life can be “normal”－another HOPE with MS meds
To stop my condition getting worse, my neurologist told me that Mavenclad might be the way to go as I was not responding to the 2 DMTs. Unfortunately, the medicine is at a very hefty price, which my insurance company will not pay for it and I will be responsible for all expenses from start to finish.
Mavenclad is believed to work by reducing the number of T and B cells in the body so there are fewer of them to attack the nerves. To cut a long story short, it tries to reset the immune system in MS in a direction of a non-self-aggressive, non-self-reactive immune system and kind of steps back to a pre-MS state. Many patients no longer experience relapses, they become symptom free and MOST IMPORTANTLY IT STOPS THE DISEASE FROM PROGRESSING.
To win a golden ticket with MS meds is never easy, many MS patients ended up unable to walk, to talk, to think, any basic body functions that you can think of would be a gift to us. If this MS medicine works for me, I will be in a “MS free” condition. This is a hope to stop me from disabling!!!
Your donation makes a difference, no matter the amount
Thank you for your generosity! Any donation no matter the amount helps to stop the disease from progressing and to bring me back to a pre-MS state. Thank you for taking the time to get to know me and my story. I will keep you updated on my progress. THANK YOU!!!
Hi everyone, my name is Alice, I’m 26 years old. I was diagnosed with Multiple Sclerosis(MS) 4 years ago. MS is a potentially disabling disease of the central nervous system that can cause damage to the brain and spinal cord. Common symptoms (what we called relapses) include double vision/ blindness, muscle control, sensory problems, difficulty in moving, speech, swallowing etc. Medications can help to slowdown the progression of disability. Unfortunately, my neurologist concluded that my MS has been highly active, as there were increase in symptoms (loss of vision & sensitivity in hands and feet) and signs of disease activity in my brain and spine given that I had been on 2 Disease Modifying Treatments (DMTs). Therefore, I was told to step up to a higher-efficacy DMT, Mavenclad, together with acupuncture treatment, to prevent further deterioration. However, I have to pay 80K out of pocket for one treatment course, which is a huge financial burden to me. ANY DONATION NO MATTER HOW SMALL GETS ME ONE STEP CLOSER TO THE TREATMENT. THANK YOU FOR ALL WHO HAVE DONATED AND CONTINUE TO.
A little more about Multiple Sclerosis(MS)
For those who want to know more about this disease, MS is a lifelong unpredictable disease with no known cure while the cause is unclear. In MS, the immune system mistakes the myelin (neuron coating) in the central nervous system as a foreign body and attacks it. Areas of damaged myelin become scarred (brain/ spinal lesions on MRI) interrupts the communication between the brain and other parts of the body, which results in the symptoms with different degrees of disability.
My MS diagnosis, relapses and treatments
1st relapse－Vision loss
My first symptom was blurred vision in my right eye back in 2015. I thought it was because of migraine as those symptoms were pretty much the same, just that migraine would be gone within a day. Even though it had lasted for a couple of days, I ignored it until I went blind in my right eye and started to have blurred vision in my left eye one week later. I was frightened and went to the doctor. I was diagnosed with optic neuritis. As it is one of the most common symptoms of MS, and often one of the first that people with MS notice, the doctor suspected that I might have MS. However, I didn’t take it seriously after having my vision partially restored. And I’m still experiencing dim, blurred and impaired color vision in my right eye as of today.
2nd relapse－Numbness spread from hand to neck
Seven months later, I had pins and needles in my fingers of my left hand. This spread rapidly from hand to neck. Therefore, I went to emergency. Again, my neurologist strongly suspected that I might have MS, he ordered a number of blood tests, MRI scans and lumbar punctures (spinal tap) to rule out other conditions with similar symptoms.
Finally, I got my official diagnosis in Feb 2016. And I knew that my life would never be the same again.
In March 2016, I was put onto Rebif Beta-1a which was an injection 3 times a week. At the beginning, Rebif worked perfectly well for me, there were no new lesions showed on my first MRI results, which made the painful injection and unbearable flu-like side effects worth it. But luck was not always on my side, there were new lesions appeared on my second and third MRI results, which indicated Rebif was not working, so I was told to move onto a stronger medication.
I have been on Terfidera, which is twice a day orally, since Jun 2019. Good news is no more injection; bad news is…the drug failed again.
3rd relapse－Prickly sensation in my feet
I have been experiencing prickly sensation in my feet since April 2020, MRI results show that my MS disease activity has been highly active, new lesions appear not only on my brain, but also everywhere of my spinal cord. New lesions were still countable for my previous MRIs, but not for this one. Apparently, it’s necessary to move onto a medication that is stronger than Rebif and Terfidera, or I may end up to be in a wheelchair.
I wish life can be “normal”－another HOPE with MS meds
To stop my condition getting worse, my neurologist told me that Mavenclad might be the way to go as I was not responding to the 2 DMTs. Unfortunately, the medicine is at a very hefty price, which my insurance company will not pay for it and I will be responsible for all expenses from start to finish.
Mavenclad is believed to work by reducing the number of T and B cells in the body so there are fewer of them to attack the nerves. To cut a long story short, it tries to reset the immune system in MS in a direction of a non-self-aggressive, non-self-reactive immune system and kind of steps back to a pre-MS state. Many patients no longer experience relapses, they become symptom free and MOST IMPORTANTLY IT STOPS THE DISEASE FROM PROGRESSING.
To win a golden ticket with MS meds is never easy, many MS patients ended up unable to walk, to talk, to think, any basic body functions that you can think of would be a gift to us. If this MS medicine works for me, I will be in a “MS free” condition. This is a hope to stop me from disabling!!!
Your donation makes a difference, no matter the amount
Thank you for your generosity! Any donation no matter the amount helps to stop the disease from progressing and to bring me back to a pre-MS state. Thank you for taking the time to get to know me and my story. I will keep you updated on my progress. THANK YOU!!!
Organizer
Alice Chong
Organizer
Monterey Park, CA