Originally Posted by vlhperry

Dear Lee,

I would reccomend bring that up with your physician. I also have a problem with sweating, but I have learned to live with it.

Low pulse rate could be caused by many different factors, such as cardiovascular exercise. Again consult your physician.

Neurologist are only now beginning to take patients seriously when they complain of autonomous problems. Autonomous problems usually do not show up until well advanced into the disease. I complained to my neurologist several times that I could not breathe. I was brought to the hospital several times, they would check my heart and exray my lungs, then send me home with a nebulizer. Not one neurologist, not even the one on call, would come in to see me. One told the emergency physician on the phone that Parkinson's had nothing to do with breathing difficulties. This was the same physician who diagnosed me with delayed stress syndrome after evaluating me for DBS surgery. He has yet to acknowledge his error in diagnosis even after I prooved the Parkinsons Diagnosis with the gene test and a modertly sever result of a FDOPA Pet scan done at Mount Zion in New York.

My son, a paramedic, watched as I tried to force myself to keep breathing while we waited for the paramedics to arrive. He swears only my diaphram muscles (strong from playing woodwind instruments) was moving, he saw no movement in the upper chest walls. He also described my breathing as having what is known as a death rattle. His crying and telling me to keep breathing was all that got me through it. Still the neurologist refused to take it seriously and stated to the emergency room physicians the Parkinson's did not cause breathing problems.

A few months later I went into a malignant syndrome because of overinjestion of drugs to control my symptoms, not the disease. I was thrashing around uncontrolably, screaming for heip. The emergency room physicians were great. They finally, after watching me go through this for 19 hours, got a neurologist to come in to see me. I was put into a coma to give my body time to detoxify. During the 19 hours of waiting for the neurologist to come, my kidneys began to shut down because it was unable to handle the protein from my constant movements. They had to try 3 times to bring me out of the coma.

Afterwords the neurologist came to see me when I was moved to a regular room from ICU. Her diagnosis, Anxiety. She blamed me for not controlling myself and allowing myself to get upset and bringing the disease on myself. When I saw my regular neurologist for my next appointment, she also pulled out the anxiety diagnosis, but I was ready for her and brought several copies of studies proving the involvement of the autonomous system and papers written by Emergency room physicians of difficulty getting help from Neurological staff who refused to acknowledge symptoms as Parkinson's related.

When my neurologist attempted to refuse me the opportunity to have DBS, she told me no. She said based on her experience with patients, I fell into the category that would more than likely commit suicide after surgery. I told her she may have seen many patients, but she had no idea what or who I was. I refused to let her slot me as a type of patient, and make her see me. She said that she would allow me to have the surgery, but it was against her better judgement basically putting the responsibility for the outcome straight on me. I had the surgery and it has been a miracle for me. People who see me say they are amazed at how much better I am.

Lee, one suggestion. At your next appointment, ask the nurse to take your blood pressure both sitting and standing. If there is a big drop when you stand or you feel dizzy, you may be having autonomous problems, and others possible reasons should be ruled out before your neurologist can be convinced of this possibility.

Good Luck,
Vicky