Leading the Charge to Cure Multiple System Atrophy.
Mission MSA is a 501(c)3 dedicated to support, education, advocacy, and research funding for multiple system atrophy (MSA), a rare and fatal neurodegenerative disorder.
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.
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
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.
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.
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
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.
Can you tell me more about your symptoms. I’m at year 2.5 since onset of symptoms but I’ve gone without a diagnosis despite seeing plenty of doctors. Through my personal research, I’m at 50/50 between Craniocervical Instability and MSA. How long have you had it for? What were your initial symptoms where you realized “I’m sick”?
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.
Could someone please explain the MSA diagnosis process? I was diagnosed with Parkinson's in 2021 but suspect that it's really MSA. I have an appointment with my neurologist in 2 weeks to discuss my concerns. What should I be asking for in terms of imaging or tests?
Very interesting lecture. My partner was diagnosed with parkinson's disease about two years ago. He does not have tremors. He doesn't asymetrical symptoms. He doesn't respond to levadopa. He has dropped head syndrome and requires a walker due to balance issues. He also has autonomic disorders with his blood pressure and heart. Recently hospitalized for "flash pulmonary edema". We attend parkinson's support groups and webinars but my partner does not resemble in any way the other patients there. Most of his doctors aside from his movement disorder doctor, are very skeptical of his parkinson's diagnosis. I believe and some suspect he has MSA. Is there a test we can take to determine if it is MSA?
It didn't take 2 weeks for myself to work but In day or two I had a great relief ! Deep mine clean salt plus some electrolytes & reduced L-Arginine & NO2s foods that is all it takes 👍
Part of Aitonomic disfunction is that your body cannot regulate body temperature. So when it’s hot their body can’t cook and when cold it can heat. So external help may be the only way to help with this symptom.
It’s so sad that MD’s miss the symptoms for so many years. My MIL was showing symptoms for 10 years before her diagnosis that didn’t occur until a fall with a fracture. That specific incident got us a diagnosis but within the year following the diagnosis she has progressed so rapidly and the MD’s continue to struggle with medication management. She has gone from driving herself around and being an awake some home maker to requiring 2 people at times to transfer her from one surface to another , incontinent of bowel, and passing out several times a day during mobility with toilet ing.our family finally after a year found a neurologist familiar with MSA unfortunately he is a 2 1/2 hour drive from her home.My MIL has fit the diagnosis to a tee for the last year, But the doctors at the ER and Hospital level in our area(3hospitals and 2 telemedicine visit with neurologist that were an hour away that were connected to the hospitals) did not know how to manage her.As the daughter in law who is an Occupational Therapist I have spent the last year trying to find as much information that I can to help educate myself and my family on the disease, treatments, and what to expect and prepare for. Hope that our medical community catches up, it’s has been a horrible struggle!I am so thankful to have found the MSA coalition! Your patient videos have helped so much, I forward them to my in laws to help educate them and also to let them know they are not the only ones fighting this battle!
This has been one of the best videos I have watched. My MIL had been passing out for 10 years prior to a diagnosis . He passing out spells occurred when she was outdoors in the heat watching her grandchildren at sporting events. Due to her age it was normal for her to avoid drinking so she didn’t have to go to the bathroom while she was at these events. In the mean time at her doctor appointments she would have high blood pressure. She spent 15 years going to a cardiologist to get her blood pressure down. The cardiologist put her through test after test even though she never had a major cardiac event. Then one of her passing out spells led to a fracture. Since that event a year ago she had 3 hospitalizations, 7 Er visits , 4 neurologists before a definite diagnosis of MSA -P. We sought out a neurologist with more experience to help us manage her symptoms . He was 2 1/2 hour drive away from our home. The trio there with her was exhausting for all of us. At all three hospitals and during all ER visits the doctors who had no experience dealing with her symptoms were at a loss as to what to do. One ER visit they DR actually berrated my father in law and told him you know her B/P drops so why did you bring her here. My father in law who is 81 years old who cannot understand most of what the doctors say, say and cried at that point and said “I called 911 because I thought she was going to die when she passed out!” This disease is a nightmare to deal with! And the worst part is that when you seek medical attention, the professionals are so unfamiliar with it they don’t even know what to do. She is always discharged home with no real medical support. Their insurance company denies rehab settings or LYC stays. And the best fix is close monitoring of blood pressure with constant change or specific med administration depending on B/P. As a family member you can only hope and pray that less time is spent on figuring out genetic disposition and more time is spent on medical management and successful tax options!
