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Posts (7)

Oct 25, 2012 · How do I get a Neurologist added to my Mayo medical team without offending my existing Mayo doctors? in Visiting Mayo Clinic

Ann:

Thank you for the excellent advice. I am now being more much proactive in advocating for my personal health and taking the appropriate actions.

Oct 25, 2012 · How do I get a Neurologist added to my Mayo medical team without offending my existing Mayo doctors? in Visiting Mayo Clinic

Don’t worry, you are not being the least bit nosey. I truly appreciate your help.

In fact I am on Seroquel XR but as of yesterday afternoon I have started weaning myself off of it. Neither my Non-Mayo psychiatrist (who prescribed the Seroquel XR approximately three months ago) nor my Non-Mayo Neurologist (who I saw for the first time yesterday morning) believe that the Seroquel XR is responsible for the tremors, insomnia or arrhythmias.

I really feel that the Seroquel XR was a tremendous help for my mood but, as my neurologist said, Seroquel XR is a double edged sword. When I met with my psychiatrist yesterday he concurred with the neurologist. The reason that I am going to discontinue Seroquel XR is that I have had medically significant weight gain since I started on the Seroquel XR. Furthermore, after looking at some recent blood work, my psychiatrist became extremely concerned that the Seroquel XR was going to push me out of metabolic syndrome into a full blown case of diabetes.

I am going to miss the Seroquel XR but I am not going to miss the extra pounds and developing diabetes.

Oct 25, 2012 · How do I get a Neurologist added to my Mayo medical team without offending my existing Mayo doctors? in Visiting Mayo Clinic

I thought that Central Sleep Apnea was ruled out, or at least deemed to be within accepted medical tolerances, once they adjusted my CPAP pressure downward from 15 to 12. The problem is that I am now sleeping much worse than before and my sleep/wake cycle has become an absolute mess.

Just this week I sought a second opinion from a Sleep Medicine Doctor outside of Mayo that is Board Certified in both Neurology and Sleep Medicine. This is the first time ever that I have seen a Neurologist for my sleep issues. Nobody, either inside of Mayo or outside of Mayo, has ever recommended that I see a Neurologist for my sleep disorders.

To make a long story short, my new sleep Doctor looked at the Mayo sleep study report and became concerned that I may in fact have an element of Central Sleep Apnea that is significant enough to compromise my sleep and my health. I am currently scheduled, insurance permitting, to have a new sleep study, outside of Mayo, conducted next Wednesday in order to test me on a BiPap machine. I have never been tested on BiPap before.

Oct 10, 2012 · How do I get a Neurologist added to my Mayo medical team without offending my existing Mayo doctors? in Visiting Mayo Clinic

Thanks for the suggestion. I feel like the “plumbing” aspects of my sleep apnea are under control due to the CPAP machine, it is the non-plumbing aspects that I think are the problems. By “plumbing” I mean that I am breathing and air is flowing through my pipes. By non-plumbing aspects I mean that I never wake up refreshed and I am having the litany of problems noted above.

I have been on CPAP since 2001 and I think that I can probably count on one hand the number of days that I have woken up feeling refreshed and/or did not suffer from excessive daytime sleepiness.

By the way, what is a “Full Panel Blood Test”? I just had some blood work done last week but I have no idea as to whether that constitutes a”Full Panel”.

Thanks again!

Oct 9, 2012 · How do I get a Neurologist added to my Mayo medical team without offending my existing Mayo doctors? in Visiting Mayo Clinic

Thank you for your kind and supportive response. My understanding is that I was partially suffering some aspect of Central Sleep Apnea when I had my most recent sleep study performed approximately two months ago. They also determined that they could eliminate the Central Sleep Apnea component merely by reducing my CPAP pressure from 15 to 12.

I am now operating under the assumption that the issue of the Central Sleep Apnea component has been resolved. Also, according to my CPAP machine my apnea–hypopnea index (AHI) has been consistently running in the 0.5 to 0.9 range since my CPAP pressure was reduced to 12.

Oct 8, 2012 · How do I get a Neurologist added to my Mayo medical team without offending my existing Mayo doctors? in Visiting Mayo Clinic

I am presently dealing with uncontrolled hypertension, sleep disorders including sleep apnea, a possible flare up of my previously diagnosed fibromyalgia, metabolic syndrome, obesity, severe stress, depression and anxiety disorders, recent development of significant tremors/shaking, periods of “fibro-fog”, periodic pain over most of my body, possible arrhythmias and/or atrial fibrillation, etc., just to name a few.

My present Mayo medical team is my primary care physician from Community Internal Medicine, Cardiologist and Sleep Center Physician(s). Based upon research that I have done I fervently believe that a Neurologist needs to be involved in, and have input to, my present diagnosis and treatment plan. I am not a doctor and I have never studied medicine. I am smart enough,however, to reach the conclusion that most of my medical problems MAY somehow arise out of disorders of the autonomic nervous system.

As I said before, I am not a doctor and I have no desire to be a doctor. That is why I need to have ALL of the appropriate medical disciplines on my team. My problems are:

(1) The earliest neurology appointment I can get with ANY neurologist is February 14, 2013. My present medical team should be finished by the end of this month.

My neurology appointment is with Dr. William Cheshire. After reading about Dr. Cheshire at various places on the Internet, and without trying or intending to be disrespectful of the other neurologists at Mayo, I really want Dr. Cheshire, and only Dr. Cheshire, as the neurologist on my medical team.

(2) When I recently had an appointment with one of my physicians about the above referenced medical issues I brought some of my research with me. I may be totally wrong in my conclusion but I got the strong impression that I offended my doctor when I tried to give him/her my research. He/she made me feel like I should stick to being just the patient. In other words I committed a major violation of some rule that patients should be seen and not heard. Now I am afraid to open my mouth for fear of offending and/or alienating my doctors. Also, my understanding is that the only reason I was getting a referral to Neurology was because of my shaking/tremors and not because of any of my other issues.

In closing, all I want to do is feel better and go back to work. Also I am only following the advice that I read at MayoClinic.com ( http://www.mayoclinic.com/health/stress-blog/MY01653).