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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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A Visit to Dr. Peterson: Part II: First Appointment and Testing By Corinne

Discussion in 'ME/CFS Doctors' started by Cort, Jan 31, 2010.

  1. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    First Appointment

    Not far into the first appointment I realized that I wasn't going to have to say much. Having already studied my records and history Dr. P. didn't waste time discussing minutiae. He immediately asked me two questions: first, if I could take away just one of your symptoms what would it be?, and second If you could work again, would you?. I found the first very appropriate but wondered about the second. until he started mumbling something about malingerer's... ridiculous... who would choose to live on $1000/month. It was obvious that after 25 years he was still frustrated about the ignorance of the public, medical community and the government regarding this illness. I knew instantly that I had found an ally.

    It was also evident in the way he would speak to my husband, look him directly in the eye when explaining symptoms, tests to be taken, etc. after all, I knew how sick I was and Dr. P. obviously completely understood that part of his job was to help my family understand. I can explain how validating it was in his presence. He gets it! A doctor who gets it! Wow! The miles traveled, the money spent, the money to be spent, the energy exerted.... it was already worth it.

    The Tests

    At the conclusion of my first appointment Dr. P. pulled out a pad and started writing up orders for tests. many tests. Because many of his patients travel far to see him it was obvious he'd have practice getting in as many tests as possible in the short time we had. At first it all seemed a bit crazy but by the end I was using the term use to describe NCAA tourney basketball....organized chaos. Everything is coordinated to a tee and I was amazed at what was accomplished in eight working days (10 total) we were there.

    Before I get into the individual tests let me say this. Though I had a lot of running around (Incline-Reno - Incline - Reno) to have tests done when the Whittemore Peterson Institute (WPI) opens in Reno in 2010 I assume it will be closer to one-stop shopping. Want to see Dr. P.'s face light up? Just mention the WPI. He agreed that it will be a major advantage to someone like me to have the WPI is the place to go and have most everything done. Awesome!
    As for me, my first stop was Labcorb just two blocks from the office. Here, about 15 to 20 vials of blood were drawn (nope, Im not kidding). Some were for routine tests and others far more complicated viral (this was pre XMRV) and immune function tests. After that it was back to the office for the one test I fear the most... the Exercise Stress Test. I was scared to death. I was so nervous I couldnt stop talking during the preparation part (this is where I earned the name Queen of Questions

    Exercise Test

    My test was performed on a stationary bike rather than a treadmill, though both are present. Though it only lasted eight minutes (short of the preferred 12), I won't kid you it was hard. As my husband put it after I haven't seen her do that much in years. It was true. As difficult as it was I learned a lot and I'm glad I did it. And the truth is, the down time after was not as bad as I had envisioned. Later, I was given the results (I flunked!) My husband said to Dr. P. She had a hard time with that test. Dr. P. simply replied, That's why we do it. Enough said. It's important that our bodies are tested under load. Dr. P said that only 15% of the result can be attributed to deconditioning and that the real reason I scored so poorly was because of metabolic poisoning. For years I told my husband I feel like I'm being poisoned. Now I understood that, in a way, I really was.

    After the test and was fitted with an overnight EKG monitor. I was very grateful that my RV was just a short wheelchair ride to the parking lot. Day One was over. It was about 4 PM.

    Day Two: Dedication

    I wanted to mention something Dr P said when reviewing the meds I had taken over the years. He looked at all the low-dose antidepressants I had tried and said (paraphrasing)..."I'm not criticizing your doctors but I just don't understand what the medical community thinks this complicated illness is....do they think it's about a couple of brain chemicals?

    Before I describe day two allow me to digress. When I was accepted as a patient I was told that patient appointments were on Tuesday at 9 AM. However because of complications resulting in the cancellation of my original appointment, I was rescheduled for 8 AM the following Tuesday. So on that particular day Dr. P. was scheduled to see two new patients back to back.

    Like most of you I have seen many doctors in the past most of whom it has been impossible to get an appointment with before 9:30. Bankers hours I call it. I'm a morning person so I always ask for the earliest one so when I was scheduled for 8 AM I was hesitant. I was assured that he would be there. I was also assured that two new patients in succession would work just fine. I know doctors. Most don't appear real flexible when it comes to scheduling so I was not confident things will go smoothly.

    By Day Two that had changed. Overhearing conversations between office staff I began to realize that this office operates to accommodate as many patients as possible. So and so just wants his shot I would hear or Ok have them come in etc. squeeze one in here, another there. On this day I overheard that there were over 40 patients! OK, so it didn't always work perfectly. There were times I had to wait and one time my appointment had to be moved to the next day but the feeling I left there with was that this office and this physician were there for their patients not the other way around. And they're all super friendly!

    My first hint at Dr. Ps amazing dedication actually occurred two years prior. The office manager told me to call back on a Saturday to check on the status of my application because she said she'd be doing some work in the office. When I called the phone was answered with Hello this is Dan. I recognized his voice from the I Remember Me DVD and I was speechless. What was Dr. P. doing there on a Saturday? If you think this was possibly a fluke hold on a moment. From an RV in the parking lot one can observe a lot. It became a standing joke between my husband and I as we need breakfast seated at our dinette with a view of the lotthe Docs here my husband would say. By Day 3 I didn't have to look at the clock to know that it was 7:25 am! Yes, 7:25 AM. every day even on the days (Wed, Thurs) that Dr. P. normally does not see patients and is normally in the research lab instead. Hold on it gets better. The next Sunday was Father's Day.:the Docs here I heard my husband say. Granted he only stayed three hours that day :). I don't know about you but there is a tremendous feeling of peace I possess knowing that there is even one Dr. working this hard and being this dedicated to conquering ME/CFS.

    Back to Day 2 MRI - After having my EKG monitor removed I was off to Reno for my 1:30 brain MRI appointment. The drive on Mount Rose Highway to Reno takes about 45 minutes. It's quite scenic but also a bit winding but my fears of motion sickness never developed. I was exhausted but took the energy to get out of the truck to snap some photos that I gorgeous Lake Tahoe overlook secretly wishing I was well enough to join the numerous bicyclists on the road.

    The MRI was on time and went well. The machine is state-of-the-art, twice as strong as any I had previously used. My advice: remove all your rings even though I was told I could leave them on. With my hands across my abdomen one ring started to burn my finger as the test began and a small blister formed a day or two later. We were packed and at the RV by 4 PM.

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