Editor’s Note: This is a brief summary (with a couple of personal remarks) from Sue Kelly about what she got out of the presentation and Q&A. Following the summary are more detailed notes, in case you are interested in reading further!
First and foremost, what does autonomic systems mean? In its most basic definition, it is the automatic systems in our bodies. In MSA patients, there is a disconnect in the autonomic functions. Some prevalent examples are blood pressure, urinary and digestive tracts, sweating, and REM sleep issues. Each of these affected systems was expanded upon by Dr. Miglis.
In MSA, often blood pressure drops, not behaving as it should. The blood pools and rushes to the legs, instead of the heart. Orthostatic hypotension (OH) is when blood pressure drops when rising from a seated or lying position. It is recommended to monitor different positions to discuss with your doctor.
In the morning, take blood pressure while still laying down, then sit on the edge of the bed, wait two minutes to take it, then stand for two minutes and take a third time.
A few notes: arm cuffs are more accurate than wrist cuffs. And, if you are getting an error, it might be because of a tremor. Have someone hold your arm steady.
There are different medications and strategies to work on with your doctor and physical therapist to help with OH.
If you are not having symptoms (dizzy, lightheaded, blurring or graying vision or tunnel vision, tiredness, feelings of unsteadiness, sudden headache, confusion or difficulty thinking, neck or upper back pain with standing), then there is no need for treatments.
Urinary issues are common in MSA. A urologist should be a part of your care team. They can assess your bladder functions to see specifically what is happening and possibly prescribe medication. Some patients will use a catheter to void the bladder, intermittently or permanently. UTIs are problematic and often cause or worsen symptoms. Please report these to your doctor immediately.
Along with urinary problems, MSA patients often have GI problems. Constipation is a major problem. Your care team can help with nutrition, water intake, and even exercises for urinary and GI issues.
Another autonomic function that doesn’t work properly in MSA is the ability to sweat. This can be evaluated by a sweat test. If you never had one, you are in for a treat! After applying a powder to your entire body and being heated up to a toasty 100.4 degrees, the powder turns red where you sweat. Treatment only includes management (not overheating) as there are no medications for sweating.
Do you have sleep disturbances? Not unusual for MSA. Dreams are often acted out and can include punching, kicking, and screaming. Fun for our partners! Sleep evaluation is highly recommended and will check for stridor (an ENT may be called in as well).
Should autonomic testing be done for MSA? Absolutely! Autonomic failures are some key criteria in diagnosing MSA.
Two useful tips I learned from the question-and-answer session:
Increasing sodium can help with orthostatic hypotension. Broth is a good source of sodium.
Simple carbs can trigger/contribute to orthostatic hypotension.