The beginning of a trip to the Mayo Clinic, Night Ranger and Roller Coasters

February 18th, 2013 by Carrie, the Just Mildly Medicated gal

Hold on, let me get some coffee…

I knew the referral was in the works and that a letter from the Center for Autonomic Dysfunction was on the way to add to my records but seeing it, knowing that soon I will be hashing out when the Autonomic and Cardiology departments can see me during the same week, it is kind of strange.

I tried to actually avoid the Mayo Clinic. Early on, I was given the option of Mayo or a small Florida based Autonomic Dysfunction Clinic. I looked at the testing each one required and went for the small facility to avoid being a lab rat. Unfortunately being diagnosed with cardiac issues, gastrointestinal, and neurological it has been agreed on that Mayo is the place for me to get the most detailed understanding of all the layers of medical issues.

So in the car dear hubby asked what exactly they’ll do to me at the Mayo Clinic. I wasn’t much in the mood to discuss it so in true to form for me I digressed to what was on the radio.

We went over the meaning of Night Ranger’s Sister Christian. Just in case anyone asks you it is NOT about a girl who is conflicted about becoming a nun, damn misleading 80’s videos. It was actually written by the drummer about his coming of age sister (Chrissy) who was ‘motoring’ around town with the wrong boys.

Okay, now I am ready to talk about it… From my conversation with the clinic and from a few friends from my support group who have gone for Dysautonomia I have a general idea of what to expect.

My week or two will consist of lots of tests. The basic labs and then a slew of tests I have already done will be done again and compared. ECG, EEG, empty gastric study, stress test, and TTT (Tilt Table Test).

The TTT is very common in the world of Dysautonomia and it isn’t a fun one for us. I am not looking forward to doing that one again. This little short range of movement shown in the pic below causes a person with an autonomic dysfunction all kinds of crazy havoc. Some pass out, for me it caused irregular changes in my blood pressure, heart rate and rhythm abnormalities and near syncope.

My description of it would be a sensation that mimics a roller coaster.

 

graphic is from the Hopkins website

 

The big hope is to forever squash the pacemaker debacle. For anyone who has followed for a while I have a few specialists (2 EP Cardiologists, Dysautonomia Specialist and a local Neurologist) and they all believe I have a different form of Dysautonomia and have very opposing beliefs on if I need a pace maker and defibrillator to keep my Inappropriate Sinus Tachycardia and Bradycardia in a safe range. I am kind of tired of sitting in on them while one reads the last report from the other.

I personally thought it should be settled in an octagon, apparently the Mayo Clinic was a better option. (wusses)

One of the cool tests is the Quantitative Sudomotor Autonomic Reflex Testing (QSART). The purpose of QSART is to test the small nerve fibers which go to the sweat glands. It to stimulate your sweat glands to see if the nerve and gland respond with a normal ability to sweat. Sounds fun…

pic from the University of Pittsburgh
Neuromuscular Disease Division

 

A new test for me, and my local Neurologist is down right excited over it, is the Thermoregulatory Sweat Test. A gold powder that changes color with sweating is applied all over the body. So yes, I will be gold dusted and pretty much think I will look like Angelina Jolie in Beowolf. Oh and I should add my doc is geeky excited over a cool test, not that I will be dusted with gold, the hubs is kind of digging the gold idea…

I edited for PG rating from Film and Digital Media on Blogspot

 

I will then enter what has been described to me as a giant tanning bed that gets really hot. It slowly increases temperature, which will eventually will make me sweat. Digital photos document the results and apparently how I sweat will help confirm what is happening to me and why.

image is from the US National Library of Medicine

 

Now why in the world didn’t I pursue this first you ask?!?!

Because even the Mayo Clinic doesn’t have a secret formula to cure or ease Dysautonomia. I am in the hopes the tests will lay out, very specifically with no room for interpretation, what type of Dysautonomia I have and possibly why I have it. My mother suffers with this condition, as does my daughter and more likely than not my sister and cousin. I hope that I can get answers that will help all of us receive the care we need.

I will keep you posted, until then I will remain Just Mildly Medicated.

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13 Responses

  1. Which Mayo Clinic??? I spent a week at the Rochester MN one!
    epplenik@gmail.com

  2. Oh man, I hope they can help…not sure how in the world you do four kids with all this going on!

  3. Shay Trashay says:

    Wow! I’m glad I stopped over, b/c I feel like I’m going to learn a lot here. You know from reading my blog that I’m Catholic :), so prayers your way this week.

  4. in pursuit says:

    Wow this was so informative and spelled out for the lay person. Well done! Everytime I read about all you go through I am in awe of your positive attitude, snarky sense of humor (which is one of the reasons I loveyou) and abilty to get so much accomplished while handling all this! You are truly amazing and helping so many people!
    V

  5. Jeremy Knauff says:

    Yet another awesome post! Your writing style is getting better with each post (It was already great to begin with!), and you do an outstanding job of helping others understand an otherwise unimaginable experience.

    I feel your pain, figuratively and literally, and hope things improve soon. Doctors suck!

  6. aunt Jan says:

    As always Carrie, excellent job!!!! Thoughts, prayers and lots of love always….

  7. Wow, Carrie, how crazy that you have to deal with this! I didn’t get a chance to connect with you at BlogU (realizing every day how long THAT list of people is!) but it is nice to “meet” you here and read your story. Good luck at the Mayo clinic. I truly hope this yields some answers for you.

  8. 431cruiser says:

    This is more common in women, but ask a man who has it what he thinks! It sucks. I went to Mayo in Jacksonville, but regret not going to MN. I understand that they do a more thorough review of you in MN.

    On my follow up visit three months later in FL, I did the first two days of testing as scheduled. On the third day, the day in which I was to see my neurologist (you only see one doc in FL), I received a call that he no longer worked their and my appointment had been cancelled. I explained that I had driven (ridden) four hours, been through two days of testing, and someone needed to see me and go over results.

    Another neuro stepped up to the plate, and entertained my wife and I for a few minutes, saying my results looked good. DUH…I was on medication. So as he was dismissing us, he offered me Xanax or “anything else” for anxiety.

    I have struggled for four years to find and keep a neurologist in our area who knows about and understands the ANS.

    Good luck to you in your journey. I have lost part of my colon and had gallbladder removed to help lower end. Still have complications on the upper end with gastroparesis, and am now in constant pain due to fibromyalgia, in addition to the usual path to hell in which we travel as POTS patients.

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