Help Terri Dysart get to Mayo Clinic!
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My mom, Terri Dysart, has been living with chronic pain from a back injury for 3 years, and has now been diagnosed with widespread peripheral neuropathy and gastroparesis, with another neurological disorder called small fiber neuropathy suspected. All of these diagnosis have been deemed “idiopathic”, meaning no known cause. Gastroparesis is an uncommon, debilitating disease meaning nearly complete paralysis of the stomach. When the stomach is paralyzed, the food just sits and rots without moving to the intestinal track. It causes a lot of pain. Oftentimes patients with Gastroparesis end up with feeding tubes to get their nutrition.
There are currently few treatments, which are all more often than not unsuccessful, and there is no known cure for this illness. However, because of the cluster of diagnosis’ in such a short period of time, her doctor feels that the onset of these diseases are likely all related. Possibly from the original back injury or possibly autoimmune related.
She has undergone steroid injections, MRI’s, Ultrasounds, Delayed Gastric Emptying tests, Electromyography, Nerve Conduction Studies, Upper Endoscopy, Endless blood testing, Physical Therapy, Acupuncture, Cranial Sacral Therapy, Visceral Massage, Dietary counseling, and currently has a small fiber biopsy and colonoscopy pending.
The symptoms she lives with on a daily basis are:
Chronic back pain
Severe nerve and muscle pain in legs
Numbness in feet and hands
Excessive weight loss
Severe abdominal pain
Uncontrollable nausea
Malnutrition
Dehydration
Debilitating fatigue
Hair loss
Weakness of tooth enamel
Tremors
Shortness of breath
Skin Rashes
Her weight today is 105 lbs. Her normal weight is 140 lbs. It’s usually painful for her to eat more than just a couple bites of food, and she is having to get fluids intravenously to stay help stay hydrated and get nutrients. Essentially she is starving.
It has become increasingly difficult for her to carry out daily responsibilities, including work.
Her and my dad have spent over $7,000 a year for the past 3 years on out of pocket medical bills alone, add to that another $12,000 a year in insurance premiums totaling just under $60,000 in the past 3 years.
She currently has insurance but they will not pay for any treatments outside of the Spokane area, let alone at the Mayo Clinic. There are no motility specialists in Spokane. She has applied and been accepted into both the Motility Disorder Program and the Neurological diseases center at Mayo Clinic in Rochester. The first appointment is scheduled for June 17th.
We hope that these specialists will be able to find some answers to help improve my mom's health and overall quality of life. She has been told that she will need to be there a MINIMUM of 10 days but could easily be as many as 20 days. They will do all their own testing which is likely to include all the testing listed above in addition to possible immunology testing and extensive blood work. The actual cost of all of this is unknown. The Mayo Clinic has an estimating program you can use to estimate costs but without knowing what actual testing will be done it is impossible to know for sure. We do know that it will be a minimum of $10,000 but likely will be much more. In addition to those costs there is the cost of getting there and staying for that extended period of time. She will also be missing work for that time as well.
so, WE NEED HELP!
My mom deserves to fully live her life again, and this seems to be the only option she has to make this better. We do not have the funds to make this happen on our own, any amount of support is greatly appreciated! Lets make Terri Dysart well again!
There are currently few treatments, which are all more often than not unsuccessful, and there is no known cure for this illness. However, because of the cluster of diagnosis’ in such a short period of time, her doctor feels that the onset of these diseases are likely all related. Possibly from the original back injury or possibly autoimmune related.
She has undergone steroid injections, MRI’s, Ultrasounds, Delayed Gastric Emptying tests, Electromyography, Nerve Conduction Studies, Upper Endoscopy, Endless blood testing, Physical Therapy, Acupuncture, Cranial Sacral Therapy, Visceral Massage, Dietary counseling, and currently has a small fiber biopsy and colonoscopy pending.
The symptoms she lives with on a daily basis are:
Chronic back pain
Severe nerve and muscle pain in legs
Numbness in feet and hands
Excessive weight loss
Severe abdominal pain
Uncontrollable nausea
Malnutrition
Dehydration
Debilitating fatigue
Hair loss
Weakness of tooth enamel
Tremors
Shortness of breath
Skin Rashes
Her weight today is 105 lbs. Her normal weight is 140 lbs. It’s usually painful for her to eat more than just a couple bites of food, and she is having to get fluids intravenously to stay help stay hydrated and get nutrients. Essentially she is starving.
It has become increasingly difficult for her to carry out daily responsibilities, including work.
Her and my dad have spent over $7,000 a year for the past 3 years on out of pocket medical bills alone, add to that another $12,000 a year in insurance premiums totaling just under $60,000 in the past 3 years.
She currently has insurance but they will not pay for any treatments outside of the Spokane area, let alone at the Mayo Clinic. There are no motility specialists in Spokane. She has applied and been accepted into both the Motility Disorder Program and the Neurological diseases center at Mayo Clinic in Rochester. The first appointment is scheduled for June 17th.
We hope that these specialists will be able to find some answers to help improve my mom's health and overall quality of life. She has been told that she will need to be there a MINIMUM of 10 days but could easily be as many as 20 days. They will do all their own testing which is likely to include all the testing listed above in addition to possible immunology testing and extensive blood work. The actual cost of all of this is unknown. The Mayo Clinic has an estimating program you can use to estimate costs but without knowing what actual testing will be done it is impossible to know for sure. We do know that it will be a minimum of $10,000 but likely will be much more. In addition to those costs there is the cost of getting there and staying for that extended period of time. She will also be missing work for that time as well.
so, WE NEED HELP!
My mom deserves to fully live her life again, and this seems to be the only option she has to make this better. We do not have the funds to make this happen on our own, any amount of support is greatly appreciated! Lets make Terri Dysart well again!
Organizer and beneficiary
Lexi Dysart
Organizer
Los Angeles, CA
Teresa Dysart
Beneficiary
