Hi,

I wrote my entire story and decided it was more than any one needed to hear! I have a long history of a great life full of fun, happiness, friends, family, church, and work! It is complicated by an episodic illness that seems to have stumped the physicians. Until now my illness has been an inconvenience, a life lesson to slow down and enjoy the good times. Now it has turned into H E _ _! So now I am turning to you, so I can vent, share, care, and for you to help me find where to look for answers.

I love puzzles and am usually good at them. My 3rd hospital admission this year I felt like I was a patient on Dr. House. The young student spent hours reviewing my history, asking me questions, watching and analyzing exactly what happens to me neurologically. Because, in reality I have two if not 3 separate neurological "things' happening!

He was so close, he knew it was basal ganglia, he witnessed the right side weakness, he understood the NEW SYMPTOMS as a reaction to CYTOMEL, he understood that the NEW SYMPTOMS seem to have triggered OLD problems were always post illness and post exertion. HE understood that they were NOT the same thing! Wow, we could do a cardiac stress test (I already had inappropriate sinus tachycardia, probably caused by autonomic dysfunction) and thus induce symptoms to evaluate from a neurological perspective!

The problem is that the Psychiatrist from hell stopped him just before the third commercial!

In 5 minutes she decided I was PSYCHOGENIC MANIA! She ignored my request to talk with her co-worker the psychologist who was on the phone with me during two of the neurological events! She refused to talk to my adult son because "...there was nothing he could say to make her change her mind". When talked to my friend over the phone, she gave her description of mania and ignored my friend telling her that she was NOT describing the reason she brought me to the hospital!

That was the end of my hope for quality care, and the beginning of my descent into a medical nightmare.

I went from respectable member of my medical care team, to a piece of dirt with less value than the slime on the bottom of your shoe. My care deteriorated until on the 4th admission I was almost completely disabled unable to walk, talk or eat without passing out. They added in Lisonpril to lower my blood pressure (I was already on a beta blocker). The nurses never came when I had problems, despite that fact that I was on a telemetry floor, and roommates visitors were telling them I passed out in the middle of a sentenct while eating! They ordered tests that would have delayed my cancer care, they ordered Lipitor without consulting me (my nuerologists had previously told me NOT to take it). They wanted to send me to discharge me to a residential rehab. Thank God I went home, when my friend was delayed from filling the prescription for LISONPRIL I stopped passing out with each meal, and I could walk to the rest room and stand up without passing out.

So, now I have a story to share, a puzzle to solve, and a need to be heard and supported through the process.

I have an endocrinologist from a cancer center who confirmed that the Cytomel and my Parathyroid were enough to trigger the initial symptoms. Two months later he is working to slowly get that back in control (my labs are ridiculously out of whack especially my phosphorous and T-4.

I am recovering, yet I still have episodes of the "new stuff". The latest as I was winding up at physical therapy. It is the speech and feeling presyncope and both legs to weak to walk that is the new stuff! It lasts from 15 to 45 minutes, and resolves with stillness, reappears with exertion. Then I have increased problems for 24 or more hours with the old stuff. The physical therapy is for the "old stuff" I am working on my gait, my right leg and arm turn in and curl during and after an episode or post exercise.

Please guide me to where I should start, before the neurological neglect permenantly damages my heart!

Helpneedednow