Feb 6, 2018

Living with MSA

We finally made it to the doctor at Baylor Neurology in Houston in about March 2016 to make a final diagnosis. It led to another line of tests with a specialist in autonomic dysfunction. I had my air capacity tested, sweat function, and a tilt table test for orthostatic hypotension. Based on the autonomic dysfunction and my other symptoms, Baylor doctors said I had probable multiple system atrophy. 

By fall 2015 I had been experiencing additional symptoms like choking on liquids and feeling lightheaded when sitting up or standing up. Incontinence was a big problem. I started Zoloft to help control a symptom called PBA that involved uncontrolled laughing and crying out of context. I had a physical therapist who came to the house and showed me how not to fall with the rollator. Also, the occupational therapist brought button hooks so I could learn to use those when getting dressed. Speech therapists were consulted for the swallowing, as well as worsening speech. Staying active by riding my tricycle and walking as long as possible helped me stay involved longer than I would have. I continued attending church, going to our Saturday "trunk sales," and working on scoring for Pearson on standardized tests all into 2015. Things only changed with a bad fall in February 2016. I was never independently mobile again after that.

It's fortunate that MSA doesn't cause a lot of pain. My legs have hurt pretty bad at times, and where I lean it causes a knot in my shoulders, which they call clothes hanger pain. Sometimes my nose tingles and I have a constant drip if I sit up.

One difference between MSA and other forms of old age dementia would be the fact that with MSA you keep your mental capacity until the end. Even though you are unable to write or read or do things you used to do, such as crocheting or sewing, or even walking, talking, or feeding yourself, you are not affected with memory loss or confusion.

MSA is considered a very rare movement disorder. Research on MSA can help with treatments and understanding other neurological diseases such as Parkinson's Disease, Alzheimer's, and MS, as well as ALS. At this time, none of these diseases has a cure or even an effective treatment to slow the progression. Some symptoms like excess saliva, swallowing issues, and even bladder control can be temporarily relieved with Botox injections, but there is a risk of getting too large a dose and having negative effects for several months. Levodopa is effective in preventing tremors and reducing muscle constriction in your neck and hands. However, it can have harsh side effects, so the dose has to be set to balance those with the benefits. Ultimately, it is not a longterm fix and we need treatments that slow or stop the disease itself.


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