Hi Jan,

I have brain stem lesions. Some on my pons and a couple on my medulla. And guess what? I have dysautonomia too. I am not sure why your neuro is dismissing this issue. Our brain stem controls our autonomic systems. You get one well placed lesion, and bingo. You have big problems.

I have swallowing issues, temperature control problems, tachycardia, blood pressures that are all over the place (high and low), fast respiratory rate, shortness of breath (for no reason), fainting episodes, sleep apnea, etc. These are all autonomic problems. You do not have to be far along in a disease process or in my case and yours, even diagnosed with a particular disease to have this problem. One badly placed lesion and you can have issues.

My brain stem lesions enhanced for over a year and a half. They had never seen anything quite like it before. Even after several rounds of steroids, they just kept enhancing and more kept coming.

There are people that have dysautonomia for no known reason and they have no brain stem lesions and will never have lesions. It is very difficult to get treatment for this problem and to get a diagnosis. I was lucky as both my internist and my neurologist recognized what was going on.

I am so sorry that you are having this problem but I wanted you to know that you are not alone. I hope you can find a physician that is versed in this problem and that can assist you in treating this complicated diagnosis. September 1st will be here tomorrow already so try to find a doctor to help you. Good luck. I am sending you good thoughts.