My grandmother was previously diagnosed with Multiple System Atrophy or Shy-Drager Syndrome. The ordeal was long and complicated, and we gained an interesting amount of experience while working with medical professionals. I'm hoping some of this advice will raise awareness of the disease and help anyone that could experience a situation similar to my family's.

Multiple System Atrophy (MSA) is a neurodegenerative disorder that progresses over time. It affects areas of the autonomic nervous system and movement. It results in progressive death and loss of function in different nerves in areas of the brain and spinal cord. Many symptoms result from this including fainting spells, change in heart rate, tremors, loss of muscle coordination and difficulty speaking. The prognosis is not good, and most patients often develop pneumonia and later pass away. The disease overall is rare. You never think something rare will happen to you until it does.

In our case, our problems began with the fact that the disease commonly appears in men. This led to many different opinions of doctors despite the symptom match up. It is also commonly mistaken for Parkinson's disease or a Parkinsonism due to the tremors.

This led to constant changes in medication or ideas to get to the root of the problem when the actual outcome was already discussed and ruled out. Her state would get worse and doctors would go back to the drawing board. It is always important that you discuss all of your options with any medical care provider you see, including a specialist. If you feel like you want a second or third opinion, now is the time to get one. Don't hold back if you want to be absolutely certain.

At the end of the day, doctors are people, too. Many have different opinions on diagnosis, treatments and more. It also means they don't always get it right, and that's OK, too. Don't be afraid to ask questions or turn down a doctor. Just because one answer is more common, doesn't mean the latter isn't a possibility. People always say to go with your gut feeling and this is true. By the time we finally went back to MSA as a possibility, so much time had gone by and we had come too far.

Not understanding parts of the medical field or the diagnosis is even more reason to ask questions and get a clearer understanding. Your pushing to be a part of the process, and your opinions, could help change the possible outcomes of long term care.

For most of the treatment, MSA was not the official diagnosis. The progression would get worse, and it's hard to see someone suffer like that. When it comes to a disease with a non-curable outcome, you face the crossroads of fighting the symptoms or treating to salvage someone's quality of life. These aren't always the same course of treatment in most cases.

It is important during this time to discuss all of your new options. You want to have all of your bases covered in terms of care in everyday life, not just treatment, and this can be stressful. Now is the time to make the difficult decisions, and as a family member, you may not like some of them. Over time, though, you'll accept it.

MSA can't be cured and tests are still being done to try to slow the progression. Many clinical trials are in progress to hopefully make future advancements. My family persevered through every trial for many years and it has been a life-changing experience for all. I hope that MSA, as well as other similar disorders, will be brought to light and that a better course of treatment will be developed in the future. When it comes to healthcare, don't be passive. Play an active role in discussing and finding your solution. You never know what you might find that someone else could've overlooked.