Janet Staples
I am a 61 year old female who was a teacher for 38 years, played college basketball, softball, field hockey and ran marathons. About 10 years ago I noticed I was tripping, falling, had tremors in my right hand and memory loss. After testing it was contributed to stress and depression. The tremors and memory loss got worse and in 2010 I had two car accidents within a month and really don't kn...ow what happened. They started testing again. They wouldn't let me drive so i started riding my bike and one day a couple found me on the side of a bike bath unconscious. After a tilt test they determined I had the condition where your blood pressure drops suddenly. With medication this has improved. I take medication for the tremors but still have times and my handwriting is poor. Nothing like when I was teaching. I do think stress had a lot to do with the severity of my symptoms.
They did a MRI and found I had atrophy of the brain. They retested my memory and cognitive and it had declined. This is when they said it was MSA. Like everyone else I had never heard of it and after some research I wish I never had. I was having difficulty swallowing so they did several test and it showed a hyenal hernia, acid reflux and silent aspiration. I began noticing my voice was raspy and it has gotten worse. I am now starting speech theraphy. Sometimes I feel I am not sick at all but after reading alot about MSA I feel they may be right. The most recent feeling is the skin on my arms at times feels like it is burning, does anyone have this symptom. If anyone can respond too my concerns I would appreciate it because I am in denial at sometimes. My husband wants to start doing things while we can and I agree if it is true, but not sure

janet

Hi Janet,
I am afraid that your condition does sound like MSA. My dad has this very rare disease also. The diagnosis was confirmed as MSA when his blood pressure started to fluctuate drastically. They take your blood pressure while laying down, wait three minutes- then take it when sitting up- wait three minutes- then take it again while standing up. The looks on the medical people's faces is just astonishment. His blood pressure changes so drastically. Even just lifting his arm makes it change drastically.

We are just starting to see how severe this disease is. My dad became totally paralyzed a few days ago. Can't swallow. We are having to make a decision about a feeding tube. I am so depressed and sad.

His voice getting raspy and very soft was also a sign. The earliest noticeable symptom was him having REM sleep behavior disorder. This is a precursor to Parkinson's disease or MSA. I also have the REM sleep behavior disorder and am having episodes of paralysis. I am crippled and really scared that I also have this disease. I have an appointment with the neurologist who diagnosed my dad on the 20th. I just want some answers at this point. I live in chronic pain and can barely dress myself. Yet I keep getting denied for disability benefits so I really need a diagnosis.

I have watched what he has gone through and my symptoms are exactly the same as his were in the earlier stages.
This disease comes with cognitive and neurological impairment. It has a sort of dementia with it. So yeah- it effects your memory etc. I think we both have hallucinations at times. I know I do. He also started to think things that were not real. Like- thinking my mom was having an affair on him and other strange things.

These 'episodes' seem to come and go. Bad days and better days. Bad weeks and then a little better for a while.

One of the big things that my dad has that I do not have (yet at least) is a really humped back and leaned forward posture with shuffling type walking.
He also can't regulate his body temperature and is always freezing. He wears a down coat in summer.

I also get a burning feeling in my arms at times. Like my blood is on fire. I have never heard of him complain of this but he never says much and just can't seem to describe or tell what he is going through. He has become really 'out of it'.

If you think you have this disease- your husband is right- you need to get out and do things while you can. Good luck to you Janet. I wish you the best and will keep you in my prayers. God Bless.