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brglassman

How do I get a Neurologist added to my Mayo medical team without offending my existing Mayo doctors?

Posted by @brglassman in Brain & Nervous System, Oct 8, 2012

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).

Tags: mental health, sleep problems, obesity

aby likes this
yusofa

Posted by @yusofa, Oct 9, 2012

Ask to rule out central sleep apnea especially if you also have some heart and nerve problems. Similar to my case, but everyone is different and we all would not be lumped together for the ease of those that never studied something you might have. My niece has Fibro, diabetes, sleep disorders, sleep apna, depression, fatique, and the list goes on. She went to England with husband, a Brit. Majority of her problems was solved by Dx of Central Sleep Apnea, which got rid of heart irregulars, she was also put on a machine for sleep and diet as she found she had food allergies w/headaches, shakes. When she finally got a few good nights of sleep, her depression left. She is still going to docs to tackle what is left. But thank God she found a clinic where someone knew where to send her. I wish you well & hope your doctors can get to the cause so you can finally find real peace.

brglassman

Posted by @brglassman, Oct 9, 2012

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.

annheaney

Posted by @annheaney, Oct 10, 2012

My brother has sleep apnea. And he controls it with a machine like you do. He feels a lot better. You may want to have a full panel blood test just to be safe.

brglassman

Posted by @brglassman, Oct 10, 2012

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!

saraandivor

Posted by @saraandivor, Oct 25, 2012

Have you ever taken any atypical antpsychotic drugs?

brglassman

Posted by @brglassman, Oct 25, 2012

What is an "atypical antipsychotic" drug?

saraandivor

Posted by @saraandivor, Oct 25, 2012

seroquel/quetiapine, zeldox/ziprasidone, zyprexa/olanzapine - these medications if used for over a 12 month period can cause shakes and tremors, insomnia, weight gain, and a wide variety of other side effects, like tachycardia. These drugs appear to be being prescribed far more widely nowadays than just within the mental health community. Sorry if I'm being nosey - just trying to help.

brglassman

Posted by @brglassman, Oct 25, 2012

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.

brglassman

Posted by @brglassman, Oct 25, 2012

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.

annheaney

Posted by @annheaney, Oct 10, 2012

You are the customer. Your medical staff is doing a service which you pay for. You need to act in your self interest.

brglassman

Posted by @brglassman, Oct 25, 2012

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.

aby

Posted by @aby, Nov 23, 2012

I have some of the same conditions and my blood pressure has been out of control for most of this year, though my doctor kept saying my home BP machine as well as most of them are never correct. It was not until almost a year later and I saw another doctor in CIM when he was not available that she ordered a 24 hr. BP monitor which proved what I was telling him was true... my BP is high and even in sleep time. He is now ordering a pulmonary oximetry overnight test which is suppose to determine if I have sleep apnea, this to after a PA recommended it. After others increased my BP meds twice this year and adding an additional BP med my BP is still elevated. I feel I should see a cardiologist. My primary care doctor does not seem to to prder any test or beliaeve my problems are real unless a substitute doctor first recommends it. He doesn't seem to think I am capable of knowing my own body's warnings! . I wish he could live in my body for just one day. I feel that because I am a chronic pain sufferer he just puts little value in my own comments about my health problems. My fear is my problems will get much worse because he doesn't seem to take me serious, i.e. my blood pressure has continuously gotten worse. It was not him that increased the meds but other doctors In CIM which I saw because he wasn't available. It was a PA who first recommended I be checked for sleep apnea. When I see my Primary care physician he never seems to think any further action is required and never has a suggestion as to what might be causing my medical problems. I am losing faith in him quite rapidly.

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