My Journey

Thank you for your help.

I was recently diagnosed with MSA, I know MSA is a form of Dysautonomia. But it does seem that not so long ago that I was diagnosed with Dysautonomia, and that seemed so complicated to me as I was trying the make sense, and manage all those symptoms. Now I'm dealing with the symptoms of MSA, including oropharyngeal dysphagia. Can anyone relate? I guess I'm hoping to hear how others manage it all. My symptoms are getting worse and I'm hearing different things from different doctors. It's a lot.

It might sound like a funny question but...I've had the feeling like I'm about to pass out but vitals are fine. Has anyone heard of this happening. It was a very strange and unsettling feeling.

I have been diagnosed with Dysautonmia. From what I understand…Dysautonomia sends incorrect messages to different parts of the body. When talking about my balance problem…I describe it as a wavering feeling (for lack of a better word, some feelings are hard to explain) in my head, sometimes affecting my eyes, and usually, there is a tension in my head also causing that unbalance. To me, this is not a lightheaded feeling or a vertigo feeling, as some would say. As I know what lightheadedness feels like. I was lightheaded when I was not feeling well a time or two, and years ago, one morning, I tried to get up, and the room was spinning, and they said that was vertigo. Am I having a Dysautonomnia experience…reaction. Perhaps one would have to know what Dysautonomia feels like to know what I am trying to say. I’m not sure.

I'd like to ask two questions in hopes of gaining understanding. What is chronic, progressive, generalized dysautonomia? Is Dysautnomia a neurological disorder?

Thank you for your encouragement, and I can relate to feeling my worst when I know the least. And I do have a question as I've been searching and researching how this all came to be. I know there are types of Autonomic disorders, but I don't fit in any of them. I've had many of the symptoms since childhood. And a few came about recently, like the one I already told you about. However, I recently read that "It can be present at birth or appear gradually or suddenly at any age..." (Cleveland Clinic) Have you heard it can be present at birth before? It sounds plausible to me as I used to pass out if I stood too long in one place when I was a kid. There were other symptoms that I either didn't talk about and/or worked around because I couldn't find a medical reason. Now I have a diagnosis, and my husband asked the nurse why are these symptoms getting worse? Age was the answer. As they say, getting older is not for sissies, although I'm not that old! 😏 So again, Have you heard it can be present at birth before?

Thank you so much for all this information. So much to learn to find out why I feel the way I do. It's all very complicated, And although I've had these difficult and wearisome symptoms, the answer to it all is so new! I just have to remember, one day at a time. And continue researching and learning ways to deal with all of this. I'm blessed to have my Home Nurse, who knows a lot about this, glad to have found this group to share and learn more, and of course, my doctor. I'm just finding it hard to wrap my mind around all I need to know about Dysautonomia.

Hi Pistol, Thank you for responding and sharing that it takes time and patience with finding the right doctors and meds. ! As I said, I'm kind of new to this. Apparently, I've had this undiagnosed for years until it got so much worse in recent years. And as I mentioned, this mostly affects my parasympathetic NS. I did find out today by my GP, that released neurotransmitter in excess affected my high BP. I hate when it does that, as it caused such a fast and pounding heartbeat, my BP goes up and, a bad and odd pain in my head followed by a throbbing headache, then extreme weakness! That was a new one for me and a little on the scary side. I'm just starting to learn more and more about all these symptoms that I thought I couldn't do anything about until I started talking to my home nurse and doctor. I started taking a new med. but I didn't like the way it made me feel so I have another appointment with my doctor soon and I'm waiting to start another. So thanks again!

I'm new to this and symptoms are mostly on the parasympathetic side. Mostly trouble with my blood pressure going up and down fast causing problems for me! Can anyone relate.