Please Help Me Receive MS Treatment
Donation protected
Please help me to receive these life changing treatments to improve my quality of life...
My name is Katie (Mahowald) Hafermann; I was diagnosed with Relapse-Remitting Multiple Sclerosis (MS) in 2001, and for the past three years I have experienced a slow and steady worsening of the disease. My condition has now advanced to Secondary-Progressive MS, which means I no longer have periods of remission. In a nutshell, MS is an auto-immune disease of the central nervous system, which attacks the brain and spinal cord and affects the whole body. MS breaks down the protective coating of the nerves called myelin, and scar tissue forms in its place. This prevents brain signals from traveling properly along the nerves so that the brain can tell the body what to do. There is no cure for MS.
After a bad relapse in 2004 left me with some permanent visual impairment in both eyes, it became difficult to work. For the last three years, my biggest struggle has been losing my ability to walk, along with increased pain, particularly in my neck, back and legs. Recently I have begun using a wheelchair at times to make it easier to get around.
The list of possible MS symptoms is long. It includes a combination of neurologic and autonomic (a term I wasn’t familiar with before) symptoms. No two people with MS have the same symptoms and severity. My symptoms include fatigue, widespread pain, muscle weakness, poor balance, difficulty walking, partial blurred vision, insomnia, anxiety, numbness, tingling, either freezing or burning sensations in hands and feet, twitching, cramping, skin sensitivity, cognitive issues such as poor short-term memory and difficulty focusing, headaches, dizziness and stomach issues. With the exception of my mobility issues, I have recently learned that the majority of my symptoms are “autonomic.”
I have tried several MS therapies, but did not tolerate them well. To spare you the details, I got injection site infections, bad side effects, and even an allergic reaction which sent me to the ER. Meds for nerve pain did not help either. I even tried gluten-free and dairy-free foods for a number of months, but those diet changes didn’t really improve any of my symptoms, so my doctor didn’t feel it was worthwhile to continue that course of action. The only thing I’ve been doing for the last several years is daily doses of Advil, Aleve, and Excedrin, which barely take the edge off my pain. I also take numerous amounts of vitamins and supplements and try to eat a healthy diet.
More and more, I have been feeling that life is passing me by while I am progressively getting worse. Over the last few years I’ve become quite depressed at times. This disease is kicking my butt, and I don’t like it! I guess you could say, “I’m pretty sick and tired of being sick and tired!” I used to be a very energetic, happy and outgoing person. MS has made me more introverted and self-conscious. Lately I’ve been more frequently opting out of social situations because I just don’t have the extra energy it takes to do everything.
Several weeks ago I was hurting, frustrated and just plain fed up with my inability to do simple things like put my socks on without difficulty or hold a pen in my hand without dropping it. I was having one of my bad days. I just prayed for an answer, for strength or for something to change. God has allowed many challenges in my life already, and I know that somehow this is all part of His plan for me, but I was basically telling Him, “God, I’ve had about all I can handle for now. Please help me or show me what to do!”
The very next day I came across an article about autonomic dysfunction and MS. It stated that most MS patients don’t realize they are very likely to have another condition known as autonomic dysfunction, or dysautonomia... and that it is dysautonomia, rather than MS, that is responsible for many of their most debilitating symptoms. It’s a type of neuropathy that affects the nerves carrying information from the brain and spinal cord to all the major organ systems in the body.
Dysautonomia is a well-studied condition that is seen in all neurodegenerative diseases, including MS, Lymes, Fibromyalgia, Chronic Fatigue, Parkinson’s and ALS. By treating dysautonomia, the underlying condition (in my case, MS) can be improved. Unfortunately, MS doctors don’t specifically target the dysautonomia as part of their neurologic care. With limited treatment options for MS, addressing the associated dysautonomia offers an alternative means to reduce the symptoms experienced by a large portion of MS patients.
A medical specialist in Newport Beach, California, Dr. Michael A. Arata, of Autonomic Specialists, is internationally recognized in the treatment of diseases relating to the veins, and he has discovered that vein dilation therapy can lead to improved autonomic function and a better quality of life for those patients with symptoms like mine. Dr. Arata is the innovator of TVAM (Transvascular Autonomic Modulation), which is a minimally invasive procedure that is performed via catheter much like angioplasty. TVAM targets the nerves that travel with the large central veins of the neck, chest and abdomen. Using a small, inflatable balloon device, the nerve fibers surrounding the veins are stimulated by dilating the veins, which essentially “resets” the autonomic nervous system. More than 90% of his patients have had symptom improvement!
After learning about the work Dr. Arata has done in this field, I watched many before and after videos of his patients and read their testimonies. They were saying things like, “During the procedure I could feel the warmth of blood flow going to my hands and feet... I could feel the brain fog lifting... I sleep like a baby at night now... My pain is practically gone... I can see better... I can walk again... My legs no longer feel like 1,000 lbs... and my favorite: I have my life back!”
For the first time ever, I started getting excited about an MS treatment!
I also learned that while treatment is aimed at dysautonomia, patients have also experienced improvements in neurologic symptoms, mainly in motor symptoms, with improvements in balance, ease of walking, increased core strength and normalization of muscle tone/spasticity. This is exactly what I need! I am optimistic that this will give me some symptom relief, but I’m trying not to get my hopes up too high. If I only experienced improvements such as less fatigue, anxiety, pain/headaches, and/or was able to sleep through the night, I would consider it a success! If my walking and/or vision improved, I would consider it a miracle!
In addition to TVAM, Dr. Arata is now doing stem cell therapy, which could enhance the results of the TVAM procedure. The idea behind stem cell therapy is to engage your body’s own regenerative capabilities. In this procedure my stem cells would be extracted from my own body fat (which has been found to have 2500 times more stem cells than the bone marrow). Then, using a special “closed system” technology, the stem cells would be injected back into my body where they are needed most without ever being exposed to the environment.
It's my deepest desire to return to a more active life and to stay out of a wheelchair for as long as possible. I know that these two procedures are not a cure for me; I will still have MS, but if the most debilitating symptoms can be treated, hopefully MS won’t have me! I believe these treatments may be the answer to my prayers, but there’s only one way to find out! I want to gain control of my life again, and hope is what keeps me going!
It is with a humble heart that I am seeking your assistance to help finance these procedures. My insurance will cover 80% of the TVAM procedure, but the stem cell procedure is 100% “patient funded” because it is still considered an experimental procedure. Then, of course, I need to get to California for a few days (one to travel, one for pre-op and testing, one for procedures and one for post-op follow-up). In total I need just over $10,000. I know there are so many worthy causes out there and so many people who need our help, but if you could find it in your heart to make even a small donation, I would be forever grateful to you. No amount is too small; every dollar gets me closer to hope for a better future!
I have scheduled my procedures for July 21, so I have less than two months to raise the necessary funds. I would really appreciate it if you would share my page or email the link to your friends and family and ask them to help if they can too. Please keep me in your prayers! I will keep posting with updates and results. My deepest gratitude to all of you! Thank you and God bless you!
My name is Katie (Mahowald) Hafermann; I was diagnosed with Relapse-Remitting Multiple Sclerosis (MS) in 2001, and for the past three years I have experienced a slow and steady worsening of the disease. My condition has now advanced to Secondary-Progressive MS, which means I no longer have periods of remission. In a nutshell, MS is an auto-immune disease of the central nervous system, which attacks the brain and spinal cord and affects the whole body. MS breaks down the protective coating of the nerves called myelin, and scar tissue forms in its place. This prevents brain signals from traveling properly along the nerves so that the brain can tell the body what to do. There is no cure for MS.
After a bad relapse in 2004 left me with some permanent visual impairment in both eyes, it became difficult to work. For the last three years, my biggest struggle has been losing my ability to walk, along with increased pain, particularly in my neck, back and legs. Recently I have begun using a wheelchair at times to make it easier to get around.
The list of possible MS symptoms is long. It includes a combination of neurologic and autonomic (a term I wasn’t familiar with before) symptoms. No two people with MS have the same symptoms and severity. My symptoms include fatigue, widespread pain, muscle weakness, poor balance, difficulty walking, partial blurred vision, insomnia, anxiety, numbness, tingling, either freezing or burning sensations in hands and feet, twitching, cramping, skin sensitivity, cognitive issues such as poor short-term memory and difficulty focusing, headaches, dizziness and stomach issues. With the exception of my mobility issues, I have recently learned that the majority of my symptoms are “autonomic.”
I have tried several MS therapies, but did not tolerate them well. To spare you the details, I got injection site infections, bad side effects, and even an allergic reaction which sent me to the ER. Meds for nerve pain did not help either. I even tried gluten-free and dairy-free foods for a number of months, but those diet changes didn’t really improve any of my symptoms, so my doctor didn’t feel it was worthwhile to continue that course of action. The only thing I’ve been doing for the last several years is daily doses of Advil, Aleve, and Excedrin, which barely take the edge off my pain. I also take numerous amounts of vitamins and supplements and try to eat a healthy diet.
More and more, I have been feeling that life is passing me by while I am progressively getting worse. Over the last few years I’ve become quite depressed at times. This disease is kicking my butt, and I don’t like it! I guess you could say, “I’m pretty sick and tired of being sick and tired!” I used to be a very energetic, happy and outgoing person. MS has made me more introverted and self-conscious. Lately I’ve been more frequently opting out of social situations because I just don’t have the extra energy it takes to do everything.
Several weeks ago I was hurting, frustrated and just plain fed up with my inability to do simple things like put my socks on without difficulty or hold a pen in my hand without dropping it. I was having one of my bad days. I just prayed for an answer, for strength or for something to change. God has allowed many challenges in my life already, and I know that somehow this is all part of His plan for me, but I was basically telling Him, “God, I’ve had about all I can handle for now. Please help me or show me what to do!”
The very next day I came across an article about autonomic dysfunction and MS. It stated that most MS patients don’t realize they are very likely to have another condition known as autonomic dysfunction, or dysautonomia... and that it is dysautonomia, rather than MS, that is responsible for many of their most debilitating symptoms. It’s a type of neuropathy that affects the nerves carrying information from the brain and spinal cord to all the major organ systems in the body.
Dysautonomia is a well-studied condition that is seen in all neurodegenerative diseases, including MS, Lymes, Fibromyalgia, Chronic Fatigue, Parkinson’s and ALS. By treating dysautonomia, the underlying condition (in my case, MS) can be improved. Unfortunately, MS doctors don’t specifically target the dysautonomia as part of their neurologic care. With limited treatment options for MS, addressing the associated dysautonomia offers an alternative means to reduce the symptoms experienced by a large portion of MS patients.
A medical specialist in Newport Beach, California, Dr. Michael A. Arata, of Autonomic Specialists, is internationally recognized in the treatment of diseases relating to the veins, and he has discovered that vein dilation therapy can lead to improved autonomic function and a better quality of life for those patients with symptoms like mine. Dr. Arata is the innovator of TVAM (Transvascular Autonomic Modulation), which is a minimally invasive procedure that is performed via catheter much like angioplasty. TVAM targets the nerves that travel with the large central veins of the neck, chest and abdomen. Using a small, inflatable balloon device, the nerve fibers surrounding the veins are stimulated by dilating the veins, which essentially “resets” the autonomic nervous system. More than 90% of his patients have had symptom improvement!
After learning about the work Dr. Arata has done in this field, I watched many before and after videos of his patients and read their testimonies. They were saying things like, “During the procedure I could feel the warmth of blood flow going to my hands and feet... I could feel the brain fog lifting... I sleep like a baby at night now... My pain is practically gone... I can see better... I can walk again... My legs no longer feel like 1,000 lbs... and my favorite: I have my life back!”
For the first time ever, I started getting excited about an MS treatment!
I also learned that while treatment is aimed at dysautonomia, patients have also experienced improvements in neurologic symptoms, mainly in motor symptoms, with improvements in balance, ease of walking, increased core strength and normalization of muscle tone/spasticity. This is exactly what I need! I am optimistic that this will give me some symptom relief, but I’m trying not to get my hopes up too high. If I only experienced improvements such as less fatigue, anxiety, pain/headaches, and/or was able to sleep through the night, I would consider it a success! If my walking and/or vision improved, I would consider it a miracle!
In addition to TVAM, Dr. Arata is now doing stem cell therapy, which could enhance the results of the TVAM procedure. The idea behind stem cell therapy is to engage your body’s own regenerative capabilities. In this procedure my stem cells would be extracted from my own body fat (which has been found to have 2500 times more stem cells than the bone marrow). Then, using a special “closed system” technology, the stem cells would be injected back into my body where they are needed most without ever being exposed to the environment.
It's my deepest desire to return to a more active life and to stay out of a wheelchair for as long as possible. I know that these two procedures are not a cure for me; I will still have MS, but if the most debilitating symptoms can be treated, hopefully MS won’t have me! I believe these treatments may be the answer to my prayers, but there’s only one way to find out! I want to gain control of my life again, and hope is what keeps me going!
It is with a humble heart that I am seeking your assistance to help finance these procedures. My insurance will cover 80% of the TVAM procedure, but the stem cell procedure is 100% “patient funded” because it is still considered an experimental procedure. Then, of course, I need to get to California for a few days (one to travel, one for pre-op and testing, one for procedures and one for post-op follow-up). In total I need just over $10,000. I know there are so many worthy causes out there and so many people who need our help, but if you could find it in your heart to make even a small donation, I would be forever grateful to you. No amount is too small; every dollar gets me closer to hope for a better future!
I have scheduled my procedures for July 21, so I have less than two months to raise the necessary funds. I would really appreciate it if you would share my page or email the link to your friends and family and ask them to help if they can too. Please keep me in your prayers! I will keep posting with updates and results. My deepest gratitude to all of you! Thank you and God bless you!
Organizer
Katie Marie Mahowald
Organizer
Prior Lake, MN