Junior Member (female)
Join Date: Oct 2011
To all those with vertigo/balance issues
I just wanted to throw this "term" out there. It is called MSA, and it stands for Multiple System Atrophy, and my father was just "diagnosed" last year. (The only way it can actually be CONFIRMED is through post-mortem disection of the brain)
This has been a constant struggle for 4 years for our family now, and it is a very, very rare and fatal disease.
I dont want to scare anyone out there, there is a very good chance that you do not have this disease, but it took my father and our family 4 years to finally get an answer to what he was experiencing, so I would like to share our experience with all of you.
It started out about 4 years ago, my father was in his mid 40's and coaching little league baseball. He was going into the dugout when he suddenly felt a strong dizziness come on, and almost lost his balance. He shook it off as just a weird experience, and continued on.
Well, he continued having these "episodes", dizziness, loss of balance, vertigo, the feeling of being drunk or on a boat.
Eventually, these "episodes" turned into 24/7 around the clock feelings. He continued getting worse and worse, barely able to walk.
He must have went to over 15 different doctors, and got tested for everything under the sun, x-rays, MRI's, blood tests, every nuerological test under the sun, stress tests, Ear problems, anything they could think of.
And we always got the same answer. Everything is fine. Everything is Negative. We can't find anything wrong.
His symptoms continue getting stronger. He can barely walk, and he is so dizzy and loses his balance so much, he can barely function, acting and lashing out while sleeping, strong tremors in his hands, and also he is having a difficult time having an erection (which I found out much later).
Early last year, his work finally told him he was too much of a safety risk to have around, and let him go.
In May of last year, we hear of a Neurologist in Chicago, that only comes to this certain hospital, once or twice a month, and he is amazing.
We set up an appointment, and go see this doctor. They spent almost 2 hours with my father, my mother and myself. Explaining the situation, How it started, symptoms and tons of tests, and many, many tears.
Afterwards the doctor tells us he is almost positive what my father has. Amazing! Finally an answer!!! He tells us he has MSA, and tells us about how they actually have to "diagnose" it, but that he is almost 100% sure this is what my dad has.
So, that was that, we leave the office, so happy that we finally have a "diagnosis" but so upset because we were told there is no cure, and nothing that could help his symptoms, but other than that, we were told nothing else.
So, the next day, I get online and research MSA. And I was DEVASTED by what I found out! How could the doctor not explain this to us?!?!
Turns out, MSA is a degenerative disease of the cerebellum. The average lifespan of someone with MSA is 7-9 years of onset of symptoms. Eventually, 80% are fully disabled within 5 years. Only 20% live past 12 years. Eventually, my father will not be able to walk, speak, eat or move any part of his body, and be confined to a bed.
Some of the Symptoms include:
Loss of Balance
vocal cord paralysis
dry mouth and skin
REM behavior disorder
Since my father's "diagnosis" last May, he has almost lost all of his ability to walk, and I am noticing a strong decline in his speech, to the point where you can barely understand what he is saying. There is no cure, There is no help, it is a terrible, horrible and fatal disease. And getting to death with MSA is going to be very, very terrible. I hope and pray that no one on these boards has MSA, or is experiencing what my father has gone through these past 4 years, but I wanted to tell his story, so that maybe, just maybe, if you are experiencing these symptoms, and have spent so many hours at countless doctors, telling you that nothing is wrong with you, maybe now, you might have an answer.