Living Beyond the Diagnosis

Your battle with MSA is going to be a real Bitch! You better be as strong and healthy as you can possibly be to take her on. The effect of MSA that will give you the toughest fight is Orthostatic Hypotension. It was the cause of 3 ER and Hospital visits for me, before I got it under control. I literally blacked out, passed out, hit the floor! Once I just fell to the ground, like a tree in the forest, and trust me when I say “it made a sound”. The other 2 times a landed on my 125lb wife and nearly crushed her to death. You gotta control this before you can make any progress. My solution has been a very specific and time sensitive med regiment. For me, the combination of Dopamine (Carbidopa / Levodopa) and Fludrocortisone has been great. You will find your own combo, but start with discussing these two drugs, with your Neurologist(s). It took me over a year to get there, it doesn’t have to take you that long, if you discuss this combo now.

Now, what is OH?

Orthostatic hypotension is a condition where a person’s blood pressure drops notably when they stand up from sitting or lying down, leading to symptoms like dizziness or even fainting. When we talk about Multiple System Atrophy (MSA) and its connection to orthostatic hypotension, it all boils down to a problem with the autonomic nervous system.

1. MSA and the Autonomic Nervous System: MSA is a neurological disorder where the brain areas that regulate both movement and autonomic functions deteriorate over time. The autonomic nervous system controls those “automatic” body functions, like heart rate, digestion, and yes, blood pressure regulation.
2. How MSA Causes Orthostatic Hypotension: One of the effects of MSA is a disruption in the autonomic nervous system’s ability to regulate blood pressure. Normally, when you stand up, the body adjusts to make sure that blood continues to reach the brain despite gravity pulling it downwards. In MSA, this adjustment can be impaired, leading to a significant drop in blood pressure upon standing. This drop is what’s known as orthostatic hypotension.
3. Significance: Orthostatic hypotension can be one of the earliest signs of MSA and is a common symptom among those with the condition. It’s not only inconvenient, causing dizziness or fainting, but can also be dangerous, leading to falls and related injuries.
4. Management: Managing orthostatic hypotension in MSA patients often involves both non-pharmacological strategies (like rising slowly, increasing fluid and salt intake, wearing compression stockings) and medications to increase blood pressure.

It’s important for individuals with MSA to work closely with their healthcare providers to manage symptoms, including orthostatic hypotension, to ensure the best quality of life possible.

Sharing this journey isn’t just about me; it’s about raising awareness for MSA and contributing to the incredible work of the Michael J Fox Foundation. https://give.michaeljfox.org/give/421686/#!/donation/checkout Won’t you please consider making a donation 😊

Thank you for being a part of my journey. 🙏💪 #MSAawareness #ResilienceInAdversity