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- เผยแพร่เมื่อ 15 ก.ย. 2024
- Created for Biohaven Pharmaceuticals for educational purposes, reflects US patient diagnostic journey.
Learn about Barbara's journey with Multiple System Atrophy (MSA) and the challenges she faced getting a proper diagnosis. Biohaven is studying an investigational drug to help people who suffer from MSA. Learn more: www.biohavenph...
This is exactly what my father is going through. It has been 5 years since his first symptoms. He has been sent from one doctor to another, with long wait times between. Finally, a neurologist suggested that he thinks he has MSA, and referred to him to another specialist with the hope he could get into a research study. That referral was made in Apr, 2023, and his appointment is in Feb, 2024! In the meantime, his symptoms get steadily worse, convincing me that it is indeed MSA. How in the world are people supposed to get early intervention when our healthcare system drags their care out for years? It infuriates me and I am heartbroken to watch what's happening to my daddy.
I'm so sorry for what your father has had to go through and it's absolutely heartbreaking to be watching a progression of symptoms and no answers for so many years. This is especially tragic for patients with MSA because of its rapid progression. I have had many non-motor symptoms and balance problems, but all lab and imaging scans were negative. Many said this is all your anxiety & pressure from work. I retired earlier than I wanted because of my symptoms. But my self esteem was devastated for retiring and the doctors say I'm normal for my age. Gradually began having movement issues with right hand & foot, my gait began to change and balanced worsened leading to more falls. A neuropsychologist I saw suggested I see neurologist who specializes in movement disorders. He diagnosed early stage Parkinsons. But he ordered a DaTscan to be sure. It's not that I want to be sick, but after these last 5 years of losing so much ground on every level, at this stage I just want this Monster's name so I can get treatment and spend quality time with my children & grandchildren. I apologize for going on this long, but because of what I'm dealing with I have a strong empathy for your dad & you. I wish you both the best!!
@@stevendiamond4117 Thank you. I pray the best for you too.
This is very hard for me when I recently found out my pops has gotten this rare disease. Most athletic, fit guy you could know. Started out 5 years ago … went to many doctor appointments. Doctors didn’t know exactly what was happening until recent 2 years ago. But as time passed it only gotten worst. Random falls , hard time walking … it’s just all around sad. Whoever is going through this … may God bless you 🙏🏽😔
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Spot on. So so rare. Unbearable to watch a loved one with MSA. But we bear it.
Even neurologists are bewildered by MSA. This is a great video for awareness. Despite being a hallmark, there are large number of cases who don't have orthostatic hypotension. Acting out the dreams is a big problem. I wish if you can make a video on it too. I am looking forward for a post-doc role in psychology in a lab specialising in MSA.
I have been diagnosed with MSA-C after the common mistake of first diagnosed as Parkinson disease ... my way of fighting is through exercise... I use to jogged every day ... not anymore, but I start in the gym ... with the bike ... at first 30 minutes 3 days a week ... now 40 minutes 5 days a week. Yes ... the most de the AMS-C advanced, the harder you have to fight ... don't give up
You are very brave and inspiring! God bless you and your caregiver.
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How are you feeling currently Mr @mologando?
Today is October 17th, I went to my neurologist yesterday, and even when the sickness advance a little bit, less than could be expected ... and I still think that exercise is very important ... also logopedia to improve our voice and digestive system ... and never ... never give up
@@moiogando Wish you all the best health and state from the bottom of my heart. Never give up!
This was spot on. Thank you for raising awareness of this horrendous disease. ❤
Thank you so much to every one of you ... even when is a hard path to walk ... you found beautiful people along the way ... may God bless you all ....
Spot on how it starts. Thank you for making this.
Thank you for your comment. We're hoping this video helps to spread awareness of this disease so more people know the signs and symptoms.
It is extremely important to be diagnosed, when you have a disease for which there is no treatment, and thank heaven we have neurologists, who specialize in diseases with no treatments.
this video helps me to understand MSA
It took me two years and persistence to get a diagnosis, All my tests kept coming back normal, except the DaT - which was not nomal.
What is the DaT test ?
That's how USA medical system is fu..ed up. You have to wait months to a year to see a doctor, which is freaking hillarious. In my country, you can see the doctor any time you want and it's cheap of course.
It’s sucks !!!