Hi…I’m Linda 👋

[neveronabike]

I’ve been searching for answers on HealthUnlocked for many years. First in Parkinson’s and then Ataxia groups. Now MSA because recently was told I have Dysautonomia that’s affecting my heart (cardiologist on board but not a neurologist). Wondering about the wisdom of the latter. Have symptoms of MSA but not severe. I’m mobile, drive and that’s about it. Thanks for all your replies from my old username “rideabike”. I changed it to “neveronabike”. Seems way more appropriate. I’m in Albert, Canada. 😂

[LoveMyGod]

How is It affecting your heart? I have PACs and PVCs more during the night than the day. I think I’m having breathing issues over night that causes them. No formal dx, but I have orthostatic hypotension and postprandial Hypo. Having an autonomic testing soon. The Neuro has not said he thinks I have it, but his exam is not compatible with MSA>

[neveronabike in reply to LoveMyGod]

Thanks for your reply! I’ll be interested in what answers you get. It helps to compare. I have a left side bundle branch block on ecg. Also PVC’s. Over night was worse on a recent test, can’t remember if it was 24 hour BP monitor or the other one that’s 24 hour monitor.

The least little exertion and I’m out of breath even just getting dressed in am. The cardiologist cannot find a reason for the heart issues. They’ve done every test possible except a carotid Doppler US…next week. My blood pressure is so erratic I sometimes feel I could drop at any moment but autonomic tests did not show OH. Also having a sleep apnea test next week. We sound amazingly similar. That’s why I asked what’s next? Because they won’t do anything until they see certain results but I don’t know where dysautonomia, considered the cornerstone of MSA, becomes MSA. Where is the line drawn when you have so many similarities? Hope you find your answers. Please keep in touch. Linda

[JJAJJ in reply to neveronabike]

Hi neverona bike, my husband suffered from profound orthostatic hypotension. I use to measure his blood pressure constantly. This info is from AI…

“A test for orthostatic hypotension involves measuring blood pressure while a person is lying down, then immediately after standing up, with a diagnosis made if there is a significant drop in blood pressure upon standing, typically considered a decrease of 20mmHg systolic or 10mmHg diastolic; this is often called a "stand-up test" or "active standing test" and is considered the primary method for diagnosing orthostatic hypotension.

Key points about the orthostatic hypotension test:

Procedure:

Patient lies down for 5 minutes to stabilize blood pressure.

Blood pressure is measured while lying down.

Patient stands up quickly.

Blood pressure is measured again immediately after standing.

Measurements may be repeated after a few minutes of standing to check for sustained drops.

Positive result:

A drop in systolic blood pressure of 20mmHg or more, or a drop in diastolic blood pressure of 10mmHg or more, when standing compared to lying down.

Further testing in certain cases:

If symptoms are present but the standard test is not conclusive, a "tilt table test" may be used, where the patient is slowly tilted to an upright position on a specialized table while their blood pressure and heart rate are monitored “.

[neveronabike in reply to JJAJJ]

Thanks. It was measured with the tilt table test during autonomic testing with a negative result. Positive for dysautonomia but not OH.