I was diagnosed in late April 2024 with tentative Parkinson’s disease. Upon my second visit the diagnosis was changed to MSA. There was no 2024 date on your register. Is this an active site?

My mother in law passed away in 2020 from MSA-P. She was diagnosed sometime around 2013 but suffered symptoms onset around 2008. Early on in her disease progression she faced many varied symptoms that seemed unrelated. She passed out on multiple occasions, suffered bladder symptoms, suffered a small heart attack that could not be explained, and then a bladder infection that progressed so severely it became septic which landed her in the hospital at Lancaster General. It was there when she was finally diagnosed by a wonderful physician named Dr. Heather Harle. Dr. Harle gave us the ability to finally understand the complexities of my mother in laws disease and offered us comfort and guidance through what would become the fight of her life. Not just her life as in the length of it, but instead the fight for the quality of it. Forever grateful for this Dr. and her willingness to listen to patient symptoms, offer therapeutic possibilities and then in the end, the hard answers like when to seek comfort care and hospice care. She guided our family through one of the most difficult journeys one would imagine. I pray for those facing this disease that there would be comfort, someday maybe a cure, and for peace and strength to face the days ahead.

I wish there was an icon that meant "just ok" because that would be a generous descriptive for this panel's presentation. There was relatively nothing new offered, which struck me as odd since a frequdnt criticism of MSA is how little information people have about MSA . This podcast does very little to right that wrong. Disappointing and

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I need help I’m not real good at computers. I was told I have Parkinsonism so I’ve been listening and learning

Hey my thing here is if your blood pressure is low isn’t that bad for the brain and starving areas like eyes of oxygen such that you should take midodrine for blood flow to get to brain etc all day ? Who can argue that lack of blood flow to brain is good just because no symptom? Especially in autonomic dysfunction where awareness can be blunted for some as is the case for those of us also with hypoglycemia

Currently going through this now with my husband. He is in a wheelchair now and losing his voice. Diagnosed with Parkinson’s initially but re diagnosed last year. It’s an awful disease for the person and for the caregiver. It has destroyed our normal family life - we cannot travel easily to see our grown children and grandchildren.

I think all those are autoimmune diseases. I have PSP. It’s just change you lifestyle for 6 months that would heal your symptoms.

I have most of these symptoms. I found your conversation by accident as im researching my own health problems. MSA is something that im interested in as i seem to be getting nowhere with autoimmune panels. Just had a bad experience with steroids. GP put me on them due to inflammation somewhere in my body. Managed 4 days before i had to stop them. I am in the UK.

What about women who are told? Their anemic that's always having low iron. Please make it make sense.

L

This is very important for me. I’ve been sick for two and a half years. My sickness started at 35 years old. I’m having severe autonomic system dysfunction, and some slight motor function loss. However, I had a brain MRI in 2021 (extreme headaches and vertigo at the time) that was normal, I had another brain MRI in 2022 after illness onset and that was normal, and I had a orbits (visual flickering, palinopsia symptoms) and partial brain MRI in 2023 and that was normal. In the past 20 days I have been deteriorating rapidly into tachycardia, extreme fatigue, and weakness in my limbs. I haven’t lost too much fine motor control in the last 2.5 years but there has been a slight loss especially in the last 20 days. I have been seeing neurologists, brain surgeons, gastroenterologists, cardiologists, urologists, etc. as this disease has impacted almost every part of my body. I used to think it was Craniocervical Instability (CCI) because of the extreme headaches, neck pain, and cracking and grinding at the base of my skull, but I’m not so sure anymore. I hope it’s not MSA but at this point in time I understand that it’s a possibility. I am desperately trying to get diagnosed.

In one of his videos he said you could double your medication first thing in the morning, then again at 4pm. I did that and my blood pressure shot up to 220/120.

My wife was diagnosed with MSA 5 years ago although we knew something was wrong about 7 years ago. It is a horrible disease with no mercy. Does any deadly disease have mercy? My wife is the kindest, and most caring and loving person I have ever met. If she loses this battle, I will be lost forever. My prayer for her and for all those afflicted with MSA as well as their loved ones is that God in His infinite mercy, bring a so much needed cure. If, in his infinite wisdom no cure is forthcoming, then to comfort all concerned with the loving assurance of eternal happiness and peace.

Rip Dr Wenning 😢

Hello, I would like to know more about this medication please. My husband has been diagnosed with MSA- C. I will email you

No sound

Austin, you are a class act! You are a true inspiration.

Sophie searches for a cure

4 years later, still nothing. Very discouraging.

53:37 I’m just learning about this condition. Wasn’t this extremely early onset for Sophie? Such a tragic illness.

Not true. My dad is currently dying of MSA. It took years to diagnose and was originally thought to be cerebellar ataxia. It started off extremely slow and went that way for several years. Then, a broken hip. Suddenly- SUDDENLY- walking without a walker wasn’t possible anymore. At times, the speech was very slowly, very subtly, getting more slurred, then it would happen quickly all of a sudden and he’d sound much different. Weakness too. One period, his left hand was very slowly getting a bit weaker, then began freezing altogether. Just a few weeks ago, he was still able to very, very softly speak and if you concentrated, you could understand him. Now, he’s basically not able to move and unable to speak. He’s dragging his finger extremely slowly across a page of the alphabet, letting us know what he needs or wants to say. They’re often complex sentences, with unnecessarily long words, when a short one would’ve done the job. My dad was a urologic surgeon. People all over the western United States knew him and would have him come give talks. He helped write medical legislation. He helped countless patients over his 35 years of practice. This disease is disgustingly unfair. It’s absolutely horrific in what it’s robbed my dad of. And I’m deeply and profoundly sorry for anyone reading this with a loved one with this diagnosis. Spend time with them now. Ask questions and have meaningful conversations with them now. And I wish you all peace and comfort, should you need it.

Hi where can I locate the pdf document for the exercises pls? They were previously available at: www.multiplesystematrophy.org/wp-content/uploads/2019/10/PhysiotherapyForMSA_Raccagni_2019-10-26.pdf

Thank you for sharing Sophie's story. My sister has been diagnosed with this disease. This will help us in helping her, and hopefully she will be feel the love as Sophie did

Thanks a looot❤

How do i sign up

My partner of 14 years died 22 days ago from MSA/P . He was 71 years old . He suffered for 4 years - it was horrible .

Thanks a lot❤❤❤❤❤

I need to ask you all, if a patient with MSA can take a flight. Is possible without risk their life?

Sending love❤

Another Neurological condition that’s underfunded of research.

Does it start with intrinsic fatty muscle infiltration in feet (so far only had MRI for feet ). Feet hurt . Stiff ankles . Atrophy of intrinsic muscles.

🫶

What is Rex's status ? Did he ever get WES ?

Is MSA and Parkinson’s the same? My grandmother was diagnosed with Parkinson’s MSA (what does this mean) are they different?

My father's symptoms started with urinary retention in 2019. In 2021, he showed signs of ataxic gait and slightly slurred speech. In 2023, he had episodes of syncope leading to orthostatic hypotension. The doctors are still not sure whether it's MSA-C because the MRI doesn't show any hot cross bun sign. He is 56 years old and currently undergoing treatment at AIIMS, Delhi.

My father's symptoms started with urinary retention in 2019. In 2021, he showed signs of ataxic gait and slightly slurred speech. In 2023, he had episodes of syncope leading to orthostatic hypotension. The doctors are still not sure whether it's MSA-C because the MRI doesn't show any hot cross bun sign. He is 56 years old and currently undergoing treatment at AIIMS, Delhi.

Thank you for the information! I have a family member that might have MSA, and I hope this information helps me to be supportive.

I never heard of MSA but I feel for all the people and families going through this medical condition. Too bad it takes so long to get a diagnosis. The sooner the diagnoses the faster treatment to slow it down. I pray for you all.

I'm struggling because I'm still considered possible MSA, but I know in my heart what the professionals can't say. I'm so afraid of the journey ahead of me. Thank you, Austin, you've given me hope

Hi its nice anf informative thankz

Austin you are such an inspiration and have strength and attitude I can only dream of.

Doing the tilt training should I wear compression socks or not?

Thank you. My maternal grandmother died in the 70s of Multiple sclerosis. My mom followed in the 80s with MS. My daughter at 17 unknown spinocerebellar ataxia, autopsy showed severe loss of Purkinje cells and bergman giliosis. My identical twin sister had Parkinosum died in a car wreck. Me, skin biopsy alpha synclein reduced nevre fibers, mri atrophy of the cerebellum. i cannot walk now, diagnosed msa-c. 4 generation in a straight line whole gnome nothing found. athena lab SCA nothing found. All of us had bp issues, syncope, wicked nightmares, bladderissues, and more. MSA-C is not inherited yet death certificates read hereditary ataxia. I’m the oldest and progressing the fastest. I ran 4 miles a day at age 50, now I can’t get out of bed, in a car, dress myself, This is a devastating disease.

By the way and this came up in another one of his talks, oxybutynin does cross the blood-brain barrier. He's got it mixed up with detrol. Not a trivial mistake

I do believe after yrs. Of looking and digging through my medical history in the last few years I’ve found to believe I have MSA. In 2021 I was diagnosed with Parkinsonism Parkinson’s disease REM sleep disorder central Bladder weakness Chronic Fatigue Sweating Also had mri of the spine. Showed up atrophy. I was told we won’t figure I was told the only way to know if I had it would be at i’ll Topsey

My ENT told me I have a lot of dryness in my throat, drink water, even a small glass, and use dry throat mouth wash which Medicare pays for on my plan. Just gargle if can, sometimes I just swish around my mouth so I don't swallow it, some days I can gargle. My ENT prefers exercising deep breaths. Stay hydrated.