If you have anything like what I have in any of the videos, please post one of yourself as a video response. Sami's You Tube
Many people I have spoken to have said, "well, I had tremors, and now I have problems with my blood pressure and heart rate." Others have said, "Well, I had dysautonomia and now I have really bad muscle spasms and involuntary movement." Neither of these are good.Either way, that cocktail is deadly. There is no cure.
I am so disillusioned by the medical community and what little effort is put into the thousands, if not millions of cases of fibromyalgia (which just means, "sorry lady (or man), I just don't want to waste my time on you, so lets just give this a name so I can give you drugs." Almost all cases of Fibromyalgia evolve into a far worse case scenario. Fibromyalgia is a blanket diagnosis just like Parkinson Plus syndromes. If they can't fix it with a pill, or there is no cure, or it will be very time consuming...they let you go. You are off to your own devices to be your own doctor.
Frankly, I quit looking for a diagnosis, because I have one. It's called neurodegenerative disease. Does it have to be MSA-Multiple Sytem Atrophy? That is just an acronym for my middle name: Sam. It doesn't deserve a stupid name. No one has to tell me what it's doing. I can really feel it now, and worse, I can see it, I can't hide it and I can't deny it. It keeps changing, but to what I have no idea. Unknown territory, ya know? I just praise God every time I wake up, because I am not so sure I will. I do know it scares me, and everyone I love. See Sarah's story
on my playlist.
From now on, I am letting God speak. I am still creating videos on interesting topics and playlisting anything that has to do with my symptoms. If it's on the playlist, I have it; all but the drooling, due to lack of saliva; that is part of MSA. Any way you slice it, it's still the same thing. Funny though, I am not scared. I am curious. I want to know why everything happens and what is happening and how it affects me and others and then I always ask myself, "how can I help?"
I love God and the very thought that even one soul out there is dealing with a neurodegenerative disease and is not being heard, or loved causes me distress. I would not wish this on my worst enemy, because no one deserves the hell of it all. I feel like I just want to love it all away. I cannot believe that we can spend hundreds of billions of dollars to explore space (which is limitless and pointless) but we can't spend money on healing people from neurological problems. The human mind is just as intricate and expansive as space. Look in, not out. Save souls, not planets and stars. Save lives with that money!!! what are you looking for anyway? will it benefit us?
So please...make your voice heard. Let the medical community know that you will not just lay down and die. I know you are tired, so am I...So if you have to, have someone speak for you. Just get heard. Michael J Fox needs our help. Parkinson is only one of several horrific neurological disorders fro which there is no cure. Are you just gonna stand there, or fall down there, and accept that? I certainly will at least make several people in the medical community mad as hell. What will they do about it?
To: Dr Mark Hallet MD (NIH)...Prove to me it's not MSA and I will quit loathing you for labeling me with Psychogenic Dystonia for your damn book (which was released ironically, right after my vist when you thrust me in front of 40 medical students). I hope you made a fortune, because you delayed my medical care for four years just to prove your point with no regard for my life quality. Get mad at that. I am finally on seizure meds, and don't have to see a shrink anymore because of your arrogance. The illness proved itself. How could you let me get that sick with no where to turn for help? You could have offered some treatment. You are supposed to be one of the best movement disorder specialists in the country!
You told me you'd help me. I saved your e-mails. Ha! Liar. i waited months to see you with such high hopes.
I haven't read the book. I'd burn it if someone gave it to me. I looked it up. Psychogenic Dystonia is a joke and the outcome is MSA, and the only argument is origin. That means you argue over who wastes time trying to figure out who will treat me, a neurologist, a neuropsychiatrist, a psychiatrist...certainly not you. You are a world-class, self-important ass that saw me 5 minutes. I forgive you, you only hurt me on the way to yourself. Oh, and psychogenesis only accounts for 3% of dystonias and they are focal. While you were out playing golf, I was trying to save my life. People use their whole life savings to get to someone like you. Please explain my death to my four kids and how it was caused by a trauma I can't remember.
Well, maybe I haven't forgiven you, I will have to repent of that, and the part about wishing you would get it.
So many people have had the same experiences as me. Well...get freakin mad already. Let God handle the rest, after all, he is in control of it all.
Today, well last month or so, I realized what an impact I may be having on the community on youtube of multiple system diseases that onset in midlife. I am getting really tired and I can only do so much by myself and with the grace of God.