Once upon a time there was a 100% healthy man who developed MSA

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My husband was an athlete and always active. He played basketball and then later volleyball with me. He was a coach from the day I met him. He has never had an alcoholic drink in his life and worked out 6 times a week.

He started symptoms of incontinence in 2010. He spent the next few years with a Urologist trying to figure out what was wrong. Including an unneccesary TURP surgery which left scar tissue. That scar tissue makes it difficult for him to self cath now. 

His imbalance started in 2012 and he fell in the middle of the night in the bathroom without injury. Since the Urologist couldn't find anything and his balance was getting worse he referred him to a neurologist. 

After several local neurologist could not come up with a diagnosis I was frustrated. "They" say never to look on the internet. But I had, had enough of uncertainy and he was getting worse. I found MSA and my husband and I agreed that he was the "poster child" for the disease. 

I got him into the Mayo Clinic in Minnesota and did not share what we had found. I mean....what the heck...I didn't even go to college and I think I have diagnosed my husband after several neurologist could not?! Even one of them (local neurologist) signed him up for a regiment of IV sterioids! When I inquired about a diagnosis she declined giving him one but wanted him on this steriod treatment. No! That was not an option for us. We needed a diagnosis before trying any treatments. 

The Mayo Clinic is just as amazing as the hype. Great experience there. My husbands sweat test and more importantly his acting out of dreams were the clinching facts that secured the diagnosis of MSA. We have calculated the "dream drama" to go as far back as 5 years. 

He finally got approve for IVIG. He has had 2 treatments. Nothing markable has happened in result of it....yet. We are still hopeful. He is going to PT to keep up his physical strength...trying to keep him out a wheel chair for as long as possible. He has had choking episodes which have gone away since he saw a Speech Pathologist and did a swallow study. SP and the ENT showed him the function of his throat and vocal cords and taught him what to do in the event of an episode. This has giving him tools by which he uses to be very sucessful in few to no more problems. 

There was discussion about a tracheostomy. My husband is not in favor of that at all. Also a feeding tube. Nope, that is not an option either. Pretty much, a wheel chair is not an option either for him. 

Not sure the time table for all to happen. We are living in the moment as much as we can. We accept this disease and are faithfilled. It is interesting the doctors reaction to someone who is dying of a disease they have no idea about. We have been extremely grateful for all the doctors he has had since diagnosis. 

I am his Medical POA. Please feel free to contact me. I am open to sharing and listening. :)

Cee Cee

PS I spoke with our local Emergency Room doctors to have them be aware that they have an MSA patient that may be visiting frequently. I didn't want to have to explain each time that he does not have MS but MSA.