Ali's Fight with CRPS/RSD
Donation protected
Hi there. My name is Tiffany Dailey and I am arranging this for Ali "Muff" Desarno. You may or may not be aware of her fight with CRPS/RSD which is a chronic neuro-inflammatory disorder. It is classified as a rare disorder by the United States Food and Drug Administration. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous system. The central nervous system is composed of the brain and spinal cord; the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body. CRPS is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area.
Her first symptoms began on February 4, 2017 while we were in Dominican Republic celebrating our 30th birthdays. Her legs began to swell. The next day they went back to normal. While we were departing the country, her feet swelled. When she returned to the states, she went to her primary doctor and was treated for parasites. The swelling and pain went from her feet, then to her ankles and legs. The pain became unbearable as time went on and was unable to walk or put any weight/pressure on her feet and legs. The pain remained and she developed burning sensations, pins and needles, cold temperatures to the affected areas, severe swelling and discoloration.
On February 8, 2017, she went to the Winchester Emergency Room and went through an assortment of tests which turned out negative and "normal" results. The doctors were baffled and Muff went home defeated with no answers and excruciating pain.
On February 14, 2017, Muff called her primary doctor, praying she could help and was sent back to the Winchester Emergency Room with the same results. During this time, she also had an appointment with a neurologist in Winchester, where they performed a Nerve Conductor Test which came back "normal". Thinking it was an infection of the spine, they ordered a MRI of the spine and set an appointment for March 10. Mentally and physically defeated once again, she was sent home with no answers or direction, bound to a wheelchair. Symptoms remained for another 20 days and her family had decided that enough was enough and made arrangements to meet with John Hopkins in hopes for a plan.
On March 7, 2017, she was admitted to internal medicine (Janway Service) where doctors worked eagerly to determine a diagnosis. They were upfront and honest that they were puzzled but promised they would continue to work hard to figure this out. Muff met with a rheumatology team who finally put a title on her condition, CRPS (Complex Regional Pain Syndrome), or RSD. CRPS/RSD is located in both lower extremities, her legs and feet. She was then sent home with an assortment of medication and was ordered intense in-home physical therapy. The rheumatology team had hope that she would be able to fight this off with medication and physical therapy.
There was no change. It was difficult to walk from her living room to the bathroom in her own home.
On March 23, 2017, she noticed her fingers and right hand started to have achy pains and shakes.
On March 24, 2017, the disease had spread, taking over her right arm where the beginning stages of pain and discoloration and cold temperatures took place.
On March 27, 2017, during her follow up appointment with John Hopkins, they confirmed that it had moved to her right arm and there is a high probability it will move to her left arm. Internal medicine ordered her to see the specialist who works with the disease.
This leads us to today. The specialist who deals with the disease has offered other treatment options including nerve stimulators, nerve blocks, and pain management.
We need your help. As you can imagine, being admitted to the hospital on the internal medicine floor March 7-13, a team of 7 doctors on internal medicine, 5 doctors in rheumatology, 7 members on the neurology team, numerous miscellaneous doctors along the way, almost 70 different tests, and further care as she fights this, has accrued medical bills that are incomprehensible.
Aside from the hospital and this disease, she has a family. She has two active daughters and a husband. Her daughters are trying to understand and her husband has been working overtime to provide for the family. At this time, Muff lost her job and is unable to work, and JT, her husband, has been going in overdrive to try and compensate the loss of a second income.
This whole situation has been devastating to Ali, her family and friends. I finally accepted the fact that she has a disease, but if you know Muff like I do, you know she is going to fight like no other and get through this. I know that deep in my heart, there is a solution to this. There has to be. As I write this with tears in my eyes, I hope that this will help them financially. No donation is too small. The last thing they need to worry about is money.
Please keep the Desarno family in your prayers. I will post updates as I get them.
I also feel the need to lighten up the mood a little bit. When I stayed with Ali and the girls Monday night, I felt the need to do everything for her. But oh no. She had to load the dishwasher. She had to wipe down the counters. She had to find the brush. She had to go from one room to another. As I tell her to sit her, you know what down, she tells me, "Tiff, shut it. I'm not going to stop until I absolutely have to". 25 years of friendship taught me to do just that.
Her first symptoms began on February 4, 2017 while we were in Dominican Republic celebrating our 30th birthdays. Her legs began to swell. The next day they went back to normal. While we were departing the country, her feet swelled. When she returned to the states, she went to her primary doctor and was treated for parasites. The swelling and pain went from her feet, then to her ankles and legs. The pain became unbearable as time went on and was unable to walk or put any weight/pressure on her feet and legs. The pain remained and she developed burning sensations, pins and needles, cold temperatures to the affected areas, severe swelling and discoloration.
On February 8, 2017, she went to the Winchester Emergency Room and went through an assortment of tests which turned out negative and "normal" results. The doctors were baffled and Muff went home defeated with no answers and excruciating pain.
On February 14, 2017, Muff called her primary doctor, praying she could help and was sent back to the Winchester Emergency Room with the same results. During this time, she also had an appointment with a neurologist in Winchester, where they performed a Nerve Conductor Test which came back "normal". Thinking it was an infection of the spine, they ordered a MRI of the spine and set an appointment for March 10. Mentally and physically defeated once again, she was sent home with no answers or direction, bound to a wheelchair. Symptoms remained for another 20 days and her family had decided that enough was enough and made arrangements to meet with John Hopkins in hopes for a plan.
On March 7, 2017, she was admitted to internal medicine (Janway Service) where doctors worked eagerly to determine a diagnosis. They were upfront and honest that they were puzzled but promised they would continue to work hard to figure this out. Muff met with a rheumatology team who finally put a title on her condition, CRPS (Complex Regional Pain Syndrome), or RSD. CRPS/RSD is located in both lower extremities, her legs and feet. She was then sent home with an assortment of medication and was ordered intense in-home physical therapy. The rheumatology team had hope that she would be able to fight this off with medication and physical therapy.
There was no change. It was difficult to walk from her living room to the bathroom in her own home.
On March 23, 2017, she noticed her fingers and right hand started to have achy pains and shakes.
On March 24, 2017, the disease had spread, taking over her right arm where the beginning stages of pain and discoloration and cold temperatures took place.
On March 27, 2017, during her follow up appointment with John Hopkins, they confirmed that it had moved to her right arm and there is a high probability it will move to her left arm. Internal medicine ordered her to see the specialist who works with the disease.
This leads us to today. The specialist who deals with the disease has offered other treatment options including nerve stimulators, nerve blocks, and pain management.
We need your help. As you can imagine, being admitted to the hospital on the internal medicine floor March 7-13, a team of 7 doctors on internal medicine, 5 doctors in rheumatology, 7 members on the neurology team, numerous miscellaneous doctors along the way, almost 70 different tests, and further care as she fights this, has accrued medical bills that are incomprehensible.
Aside from the hospital and this disease, she has a family. She has two active daughters and a husband. Her daughters are trying to understand and her husband has been working overtime to provide for the family. At this time, Muff lost her job and is unable to work, and JT, her husband, has been going in overdrive to try and compensate the loss of a second income.
This whole situation has been devastating to Ali, her family and friends. I finally accepted the fact that she has a disease, but if you know Muff like I do, you know she is going to fight like no other and get through this. I know that deep in my heart, there is a solution to this. There has to be. As I write this with tears in my eyes, I hope that this will help them financially. No donation is too small. The last thing they need to worry about is money.
Please keep the Desarno family in your prayers. I will post updates as I get them.
I also feel the need to lighten up the mood a little bit. When I stayed with Ali and the girls Monday night, I felt the need to do everything for her. But oh no. She had to load the dishwasher. She had to wipe down the counters. She had to find the brush. She had to go from one room to another. As I tell her to sit her, you know what down, she tells me, "Tiff, shut it. I'm not going to stop until I absolutely have to". 25 years of friendship taught me to do just that.
Organizer and beneficiary
Tiffany Dailey
Organizer
Charles Town, WV
Ali Barker DeSarno
Beneficiary