A bit about Multiple System Atrophy

[roniron22bd]

I am a doctor at NYU. We are doing a clinical study on MSA, we also do a clinical trial of rifampicin for patients with early MSA. Feel free to contact me for more information.

[MissVelvetElle]

Thank you~God Bless --I recently found a great radio station with lots of encouraging and uplifting shows-it's called Hay House Radio (it's online and free-apps too). It helps me a lot ~ you may want to check it out :)

[tangerinetigerr]

HI; i feel her/your pain; i used to play guitar; then i learned to play piano by

ear; i played a 9-minute piece of classical music 2 years ago in a talent show;

then DC t00k my hands away from me; i can barely eat properly; i cry inwardly

daily as i wrote many songs, mostly instrumental, and saved them on my PC;

THEN i was in the hospital for almost every week for 9 months only to find

that my PC crashed, with all the music gone; i can not play it again; please

PRAY for all with DC. Hugs!!!

[tangerinetigerr]

Thank you for sharing, curemsa. This feels like a support

group. It does g00d to talk. =]

[SurrenderPink]

Thanks for posting this and sharing your Mom's story. I hope your entire family finds the peace it deserves.

[invens1]

sexy chick !

[brandonlaner]

@deathofisrael Please give me any information you have on your healing. exact diet? whatever? me and my family would really appreciate this. my mom is now about 5 years along in the disease and we have tried everything except natural, i would forever be in your debt.

[deathofisrael]

@brandonlaner

You got mail !!!! 

[lenf2]

I was diagnosed with Shy-Drager several years ago when my blood pressure and pulse stopped working together. Since then I have been relegated to full braces on both legs, a neuro-stimulator implanted in my back, increasing asthma and ulcers, along with stents in my heart due to frequent heart attacks and TIAs.

As you mentioned, I was exposed to heavy amounts of pesticides from aerial spraying of cotton fields. I have tried to get a doctor to see the connection to the effects of this.

[lenf2]

I was diagnosed with Shy-Drager several years ago when my blood pressure and pulse stopped working together. Since then I have been relegated to full braces on both legs, a neuro-stimulator implanted in my back, increasing asthma and ulcers, along with stents in my heart due to frequent heart attacks and TIAs.

As you mentioned, I was exposed to heavy amounts of pesticides from aerial spraying of cotton fields. I have tried to get a doctor to see the connection to the effects of this-no luck.

[Lindasabo1]

Thank you for this video. They say that a picture is worth a 1,000 words. Your video is worth so much more... On Facebook there is a page "Miracles for MSA" which can be helpful...it has many links to help people learn about this disease. Thanks again.

[Lindasabo1]

Thank you for this video. They say that a picture is worth a 1,000 words. Your video is worth so much more... On Facebook there is a page "Miracles for MSA" which can be helpful...it has many links to help people learn about this disease. Thanks again.

[tfremo]

I appreciate your videos on MSA.

[DFunkTTT]

Thanks "curemsa" for spreading the word about MSA and allowing everyone to share their experiences, in order to help each other. There will be a cure. Let's think positive!

[DFunkTTT]

just wanted everyone to know that you're not alone...my dad was diagnosed with MSA in 2007 and it's been a nightmare ever since..crazy how this disease is so gradual..and so fast. just like everyone else, it's been hard for me and my family..gone through so many different Dr. appointments and all that..and no one can find anything that's causing it. right now I say that everyone should look onto STEM CELL THERAPY. my family and I are considering on bringing my dad to a stem cell clinic in China

[SurrenderPink]

@DFunkTTT Currently, stem cell therapy will NOT help patients with MSA or other neurological disorders. All claims otherwise are 100% fraudulent. According to Larry Goldstein, is one of the nation's leading researchers in stem cell treatment, viable treatments are still 5-15 years away.  Look into all the hoaxes that 60 Minutes uncovered and save yourself and your family additional suffering.

[micheleluvmoon]

My father is dying from MSA. He's in the hospital now. This is such a terrible disease. My dad was the most active person. He is my friend and I hate seeing him like this, it makes me so sad.

[funkyhats101]

the exact same thing is happening to me. i feel for u <3

[chinaslippers]

My mum has also been diagnosed with MSA. She's only 54 but seems to have declined quite a bit over the last 2-3 years. It is such a terrible disease and so hard to watch someone you love go through all this. My dad is now her full time carer and my sister and I struggle with trying to lead a 'normal life'. Does anyone know any organisation which is helping raise awareness / funding research into this disease? Preferably in australia? Don't know w

[stgtggsg8038]

Hello, I hope your mother has survide this terriible ordeal. Was your mother on Statin Drugs?? My husband was prescribed statin drugs after undergoing bypass surgery. He was getting to the point where he could not perform his daily tasks. He was diagnosed with MSA, I believe his problem was caused by Statin Drugs, after a discussion with his Dr he was taken of Statin Drugs April 7. He started taking Proargin-9 May 11, his health has improved dramatically

[usero1965]

we are still hoping she will stay with us for 3 or longer years....what we can only do is to make sure the family is there to make her laugh. buy the way, I think m mom got it from years of using a Pesticide (malathion) since he loves Orchids. She's turning 70 this year. tnx

[usero1965]

we have the same situation... my mom was diagnose with parkinson year 2002. 2004 she was given a lot of test since she wasn't reacting to her medicines. After a series of test she was diagnose with MSA,. she first lost the ability to use her hands, then feet. It was followed by her lost of speech and then her swallowing. 2006 she had aspiraton pnuemonia. She has PEG now or her feeding and Trache for breathing. counting the first time she was diagnose with parkinson, she is on her 7th year...

[ozy18708]

my best friends dad has this. thank you for the full information on it. i didnt want to ask my friend about what it does to his dad..

[budha967]

My father has opca which is in the category of msa it not only effects him but us look it up. I hate this disease with such an intensity it almost hurts sometimes so I know what you're going through.

[FallaciesDetective]

God bless you and your mother, dear...

[AranKawadri]

Thanks for the video, unfortunatly my grandfather passed away with MSA, it's a terrible disease and really should get more funding.

I have a strong belief that multiple system atrophy is caused by allergies which they don't know about. For example my grandfather was coelaic (not able to eat wheat or gluten) but we did not know until mid way through the disease, I looked it up and it says that if you still eat wheat while having the Coelaic disease it will cause a neurological disease like MSA.

[oonniigg]

Thank you for sharing your story about your mothers msa

my father has been diagnoed with msa .He was tolled 15 years ago that he would die but is still alive and being looked after .He has all of the symptoms that you have talked about

I hope you look after yourself as well because the stress and emotional toll that it takes on the carers is quite high

Its strange to see someone in exactly the same situation

even though I am not a person of faith .I will say God bless you and your mum Gino

[rebelearth]

I just found out today my mom has

Msa, I related to everything you said, everything... This shit is so unfair :( I love my mom

[tommyy3333]

Hi,

Miss,Your 6 minute video is more informative than many websites or pamphlets that I have read. Symptoms began in 2005 and I was first diagnosed with Parkinsons. In November of 2007, it was changed to Shy Drager. I am still mobile, but am declining, also, I have many of the symptoms. Thanks for the insightful video. Tom

[santamonicastenogrl]

hi, my name is cheryl.

MSA took my mother yesterday. she was 68. she spent the last months, since May 17 of 2009 in the hospital dying. it was horrible. we stopped feeding tube last tuesday at her request by her blinking eyes. she has not talked for months.

i want you to know how much your video helped me not feel so alone. how is your mother?

[drumdonkey]

I'm currently helping out with research in a lab at Western Michigan University. We are investigating several different causation mechanisms. If you want more info, feel free to let me know. There's not a lot I can tell you right now other than that we are working! God bless.

[sanityflash]

My mother had Olivopontocerebellum; it has many similiarities. Or is it the same disease? It was a very sad time to watch her suffer; she was brave and awesome.

[dioukorr]

yea they should put more resserch into this my mum has this disease and me and my dad take care of her i just wish they would put some more effort into reserch

[xanskinner]

My dad also has MSA. Thanks for sharing. Perhaps we should create or participate in a listserv? I'm curious how autowriter12 is able to write. My Dad can not use his hands well enough to use or hold a computer.

[pagnmickie]

My mother has this disease too. She was diagnosed when she was 54. Very young. Unfortunately, now my father who cares for her has been diagnosed with pancreatic cancer. It has spread to his liver and they cannot operate. Bad times :( thanks for the video. It's nice to know someone understands.

[6maya9]

i feel your pain as i have lost my mother to msa she had the exact symtoms. i wish they looked in to the illness do some research and tests and find answers i will be very happy.

they can do big research for cancer i hope they can do it for msa.

[FromEmilyWilliams]

I think they will when someone famous gets it . more people need to know! Our doctors need to to know what it is . its scary when they never heard of it! my wife has it she is 47 years old . and i do feel helpless and hopeless. our communities need to wake up and pitch in. my goal in life is to spread t he word one on one to everyone! I am bold and I am strong and my thoughts and my prayers are with every one that has to deal with this diease. it is hard but we can do IT !

[Drkadrk]

How long ago was your mom diaged?

[curemsa]

She was initially diagnosed with Parkinson's disease in 2003. In February of 2007 or 2008 was when they began referring to her as having "Parkinsons-plus". Thanks for your comment. So sorry you lost your mom to this.

[Drkadrk]

@curemsa maybe to someone else? My dad has msa and is still alive. my mom is fine.

[Drkadrk]

My dad has MSA, he is now 65 and was diaged by ME before doctors realized although I came up with shydragger it is the same. he is now stabalized but is almost not able walk at all as it is progressive. he is about 4 years in but was diagnosed 2 yrs ago

[Autowriter12]

I also have MSA. I think I am at about the same stage as your mother. The information you gave was very helpful. Almost nothing is known about this disease. I found the diagnosis very much the same way as your mother did. The pill levadopa didn't work. Where is your mother now? Is she at home? I've decided against a feeding tube - it was interesting that you discussed that issue. The feeding tube would only prolong this disease.

Autowriter12

[DesertStorm55]

My grandpa is also suffering from MSA, shitty that they don't look into the disease more.