Sorry to take so long to get back to you. We are going for the Syn-one test soon. I live in Maine and getting help here is dire. The "rash" was a breakdown of nerves under the skin. Things have been bad..onward,
@shelleystolfi, I am so sorry to hear things have been bad. And, the reason for the rash makes sense. Is it under control now? My Syn-One test was normal, but I still continue to have all the same symptoms. Backache and leg weakness are two new ones. I am sure you are meeting yourself coming and going with everything on your plate. How is your husband’s mood? Is he having any normalcy of life? It is just heartbreaking for a person of his age to be in this condition it should be a time for winding down and looking forward to retirement. I am keeping you both in my prayers. 🙏
Sorry to take so long to get back to you. We are going for the Syn-one test soon. I live in Maine and getting help here is dire. The "rash" was a breakdown of nerves under the skin. Things have been bad..onward,
Just dove into this discussion. @shelleystolfi
Toothakers here in ME. Parkinson’s Plus diagnosis. MSA fits my husband to a T. Home from ER this AM with uncontrolled hypertension. 225/107. Took Hydralazine. We are long on this path but still seeking symptom management tips. Have not done mayo workup. Have team in FL.
Just dove into this discussion. @shelleystolfi
Toothakers here in ME. Parkinson’s Plus diagnosis. MSA fits my husband to a T. Home from ER this AM with uncontrolled hypertension. 225/107. Took Hydralazine. We are long on this path but still seeking symptom management tips. Have not done mayo workup. Have team in FL.
@junetooth, Are you having a work up at Mayo Florida. Have you had Syn-One skin test or any other testing or is it by clinical suspicion. I had super high b/p that would not respond to meds about a year ago, but that seems to have subsided. No dx for anything just a lot of weird symptoms. One odd thing I noticed when I had this, I have post meal b/p drops, so eating especially carbs would bring my b/p down. Such an odd laundry list of symptoms. Take care, as best you can. 😊 🙏
Sorry to take so long to get back to you. We are going for the Syn-one test soon. I live in Maine and getting help here is dire. The "rash" was a breakdown of nerves under the skin. Things have been bad..onward,
I had the test, result was normal, but I still have all the same misery and symptoms. Now what? I never knew life could be so miserable and hopeless. Hope your days are better and that by some miracle, your husband does not have MSA, but what is the cause of the symptoms if not. God bless.
I had the test, result was normal, but I still have all the same misery and symptoms. Now what? I never knew life could be so miserable and hopeless. Hope your days are better and that by some miracle, your husband does not have MSA, but what is the cause of the symptoms if not. God bless.
I’m sorry you have no answers. I read recently that MSA, Parkinson’s and MS have similar presenting symptoms. If you have the energy research that overlap. Blessings to you.
I'm sorry to say that with MSA, you can only manage the symptoms. My spouse experienced symptoms (primarily REM sleep disorder and occasional orthostatic hypotension) for many years before receiving a diagnosis, By the time he was diagnosed in 2021, he was already quite ill.
In my opinion, PT played a major role in maintaining a good quality of life. He had PT off and on for about five years after the diagnosis, but he consistently did his exercises six days a week — up until the last two or three months of his life.
His positive attitude and determination to keep trying, along with medications for various symptoms such as blood pressure, sleep, etc, also helped improve his quality of life.
As for bladder issues: early on, he received Botox injections, which were very helpful in managing daytime symptoms, though they weren’t as effective at night. For nighttime, he used condom catheters for five years, which helped him avoid major urinary tract/bladder infections until 2024.
Despite all our efforts, there was a steady decline which is part of this disease. He passed away this past spring. Still, I believe he had a good quality of life overall, thanks to a combination of his personal attitude, regular exercise, symptom management, and the dedicated care of his physicians, nurse practitioners, and caregivers. After 2023 his POLST requested no invasive procedures which included feeding tubes. His MSA diagnosis was confirmed by a brain autopsy.
I truly wish you and your friend strength and support on this journey. The MSA journey is not something anyone would choose, but know that good moments and quality of life are still possible along the way.
He has been dealing with rapid decline for over two years. Many symptoms, from needing help to get up and move, to tremors, to balance problems, and problems with autonomic functions. He has had many visits and treatments from doctors but needs something special that might be out there. Thank you.
Regards,
Sagan
I'm sorry to say that with MSA, you can only manage the symptoms. My spouse experienced symptoms (primarily REM sleep disorder and occasional orthostatic hypotension) for many years before receiving a diagnosis, By the time he was diagnosed in 2021, he was already quite ill.
In my opinion, PT played a major role in maintaining a good quality of life. He had PT off and on for about five years after the diagnosis, but he consistently did his exercises six days a week — up until the last two or three months of his life.
His positive attitude and determination to keep trying, along with medications for various symptoms such as blood pressure, sleep, etc, also helped improve his quality of life.
As for bladder issues: early on, he received Botox injections, which were very helpful in managing daytime symptoms, though they weren’t as effective at night. For nighttime, he used condom catheters for five years, which helped him avoid major urinary tract/bladder infections until 2024.
Despite all our efforts, there was a steady decline which is part of this disease. He passed away this past spring. Still, I believe he had a good quality of life overall, thanks to a combination of his personal attitude, regular exercise, symptom management, and the dedicated care of his physicians, nurse practitioners, and caregivers. After 2023 his POLST requested no invasive procedures which included feeding tubes. His MSA diagnosis was confirmed by a brain autopsy.
I truly wish you and your friend strength and support on this journey. The MSA journey is not something anyone would choose, but know that good moments and quality of life are still possible along the way.
Thank you. I wish you all the best. And please remember my favorite scientific law, the first law of thermodynamics: energy can be neither be created or destroyed. Therefore, when our loved ones pass away, they are still part of the universe that we live in, just in different forms of energy.
Regards,
Sagan
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@shelleystolfi, I am so sorry to hear things have been bad. And, the reason for the rash makes sense. Is it under control now? My Syn-One test was normal, but I still continue to have all the same symptoms. Backache and leg weakness are two new ones. I am sure you are meeting yourself coming and going with everything on your plate. How is your husband’s mood? Is he having any normalcy of life? It is just heartbreaking for a person of his age to be in this condition it should be a time for winding down and looking forward to retirement. I am keeping you both in my prayers. 🙏
Just dove into this discussion. @shelleystolfi
Toothakers here in ME. Parkinson’s Plus diagnosis. MSA fits my husband to a T. Home from ER this AM with uncontrolled hypertension. 225/107. Took Hydralazine. We are long on this path but still seeking symptom management tips. Have not done mayo workup. Have team in FL.
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1 Reaction@junetooth, Are you having a work up at Mayo Florida. Have you had Syn-One skin test or any other testing or is it by clinical suspicion. I had super high b/p that would not respond to meds about a year ago, but that seems to have subsided. No dx for anything just a lot of weird symptoms. One odd thing I noticed when I had this, I have post meal b/p drops, so eating especially carbs would bring my b/p down. Such an odd laundry list of symptoms. Take care, as best you can. 😊 🙏
I had the test, result was normal, but I still have all the same misery and symptoms. Now what? I never knew life could be so miserable and hopeless. Hope your days are better and that by some miracle, your husband does not have MSA, but what is the cause of the symptoms if not. God bless.
I’m sorry you have no answers. I read recently that MSA, Parkinson’s and MS have similar presenting symptoms. If you have the energy research that overlap. Blessings to you.
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Helpful -
Hug
1 ReactionHelping a very ill 53 year-old male. Any success stories or positive information regarding Multiple System Atrophy (MSA)? Many thanks in advance.
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3 ReactionsWhat is the symptom picture? Has he been dxed by doctor and how long in form dx?
I'm sorry to say that with MSA, you can only manage the symptoms. My spouse experienced symptoms (primarily REM sleep disorder and occasional orthostatic hypotension) for many years before receiving a diagnosis, By the time he was diagnosed in 2021, he was already quite ill.
In my opinion, PT played a major role in maintaining a good quality of life. He had PT off and on for about five years after the diagnosis, but he consistently did his exercises six days a week — up until the last two or three months of his life.
His positive attitude and determination to keep trying, along with medications for various symptoms such as blood pressure, sleep, etc, also helped improve his quality of life.
As for bladder issues: early on, he received Botox injections, which were very helpful in managing daytime symptoms, though they weren’t as effective at night. For nighttime, he used condom catheters for five years, which helped him avoid major urinary tract/bladder infections until 2024.
Despite all our efforts, there was a steady decline which is part of this disease. He passed away this past spring. Still, I believe he had a good quality of life overall, thanks to a combination of his personal attitude, regular exercise, symptom management, and the dedicated care of his physicians, nurse practitioners, and caregivers. After 2023 his POLST requested no invasive procedures which included feeding tubes. His MSA diagnosis was confirmed by a brain autopsy.
I truly wish you and your friend strength and support on this journey. The MSA journey is not something anyone would choose, but know that good moments and quality of life are still possible along the way.
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Helpful -
Hug
10 ReactionsHe has been dealing with rapid decline for over two years. Many symptoms, from needing help to get up and move, to tremors, to balance problems, and problems with autonomic functions. He has had many visits and treatments from doctors but needs something special that might be out there. Thank you.
Regards,
Sagan
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Helpful -
Hug
5 ReactionsThank you. I wish you all the best. And please remember my favorite scientific law, the first law of thermodynamics: energy can be neither be created or destroyed. Therefore, when our loved ones pass away, they are still part of the universe that we live in, just in different forms of energy.
Regards,
Sagan
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Helpful -
Hug
2 Reactions