Mayo Clinic for Dysautonomia Conclusion

April 8th, 2014 by Carrie, the Just Mildly Medicated gal

The week of many doctor appointments was over, I was emotionally and physically exhausted but I was heading home.

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After a few days at home getting back into our routine and catching up on “vacation” laundry I received the summary of my week from Mayo in the mail.

I will give you some of specifics of my testing in order to tell my story but in no way encourage the sick chick contest. The truth is people are individuals and we all have different baselines of our own personal normal.

On to the test results, don’t worry; I won’t bore you with all of it. These are just the likely diagnosis after each test and a few highlighted comments.

* Vestibular Test (Make You Dizzy and See What Happens)

Diagnosis:

1. Multifactorial Dizziness

2. Orthostatic Intolerance

Recommendation:

1. Appropriate candidate for vestibular and balance rehabilitation program

* Behavioral Health Standardize Assessment: (Mini International Neuropsychiatric Interview… and if that was the mini I can’t fathom the long version)

Diagnosis:

1. Possible Chronic Subjective Dizziness

2. Possible Generalized Anxiety Disorder; She is hypervigilant and a normal response of anxiety can exacerbate hypervigilance as to how her own body is behaving. It is possible that the anxious response could heighten the concerning sensations. She falls under conscientiousness which supports her hyperviligant mindset regarding experiencing symptoms.

* Endocrinology Lab

Everything was normal other than heightened norepinephrine levels were marked too high

*Autonomic Reflux Screen

Diagnosis:

1. Mild Patchy Postganglionic Autonomic Sudomotor Impairment with Cardiovagal and Adrenergic Function; these findings suggest sudomotor neuropathy but do not suggest widespread autonomic failure.

The QSART (Sweat Test) all of my sweat cells were well below the normal range. This surprised me because I feel like a sweat a lot                       but apparently it’s just my face that sweats a lot, awesome…

My TTT was considered normal, my heart rate increased 29 beats five minutes after being raised to a tilt with a normal BP                                       fluctuation, the Postural Orthostatic Tachycardia Syndrome criteria is a heart rate increase of 30 or greater, thanks body…

* Heart Rate and Blood Pressure Monitor

1. Basic rhythm was sinus with intermittent Left Bundle Branch Block. (LBBB)

2. Heart Rate varied from 66 to 147 over the 24 hour period with an average of 94BPM

3. Rare VPC occurred slightly, once in a pair and once in a 3 beat run of ventricular tachycardia, rate 111BPM

4. Rare SVPCs occurred singly and in a pair

5. ST segment analysis does not appear due to her LBBB

6. Low systolic blood pressure reading of 87/41 mmHg at this time ECG strip showed sinus rhythm, rate 77BPM

(I’ll have to ask for this translate into English)

Diagnosis:

Systolic Hypertension Intermittent with Tachycardia / Heart pounding and dizziness usually reported during times when HR and BP were increased

* Audiogram

Normal other than moderate/moderately severe drop at 6 and 8k (these are apparently the sounds of a cricket, so if there is a cricket zombie attack from my left side I might be in trouble.)

* Stress Test

1. Stress Test abnormal but non-diagnostic for ischemia due to LBBB

2. Severely reduced peak VO2

3.  Could be due to profound deconditioning (ass) though we cannot rule out some impairment of cardiac output

4. Peak BP 200/60

5. VO2 rise abnormal

6. O2 pulse rise abnormal

7. HR response resting 106BPM / 1 minute 151BPM

DRUM ROLL PLEASE… The final summary is…

* A mild Autonomic Sudomotor Neuropathy without autonomic failure

* Orthostatic Intolerance and occasional Postural Orthostatic Tachycardia was noted ; a vasodepressor response with no clear evidence of Primary Autonomic Failure

* The fluctuating heart rate during all postural positions in part might reflect intrinsic heart disease

The treatment plan was the same as my current plan just a different schedule. For example I take 10mg of midodrine 3 times a day, Mayo recommends I take 10mg in the morning, 10mg midday, and none or 5mg late afternoon. There were a few medications they would like to see me come off of but the Center for Autonomic Disorders feels they are the right medications for me.

I have a lot of information from Mayo that I can bring to my local team of doctors, mostly my neurologist (who I adore) and cardiologist (who I have already broken up with so now I need to see if we can get back together or find a new one).

My feeling and opinions…

Overall I was disappointed. Most of this information reconfirmed things my previous doctors already knew. My main doctor wanted to start from scratch and ignore my existing diagnosis instead of using it as a starting point even though I had a multitude of testing summaries and disks of imaging that confirmed it.

While the pro to this was a true new set of eyes not tainted by a possible wrong diagnosis, however it also left no time to look at things like getting a new opinion about treatment for my gastroparesis because I was busy being evaluated for things I don’t have much of an issue with; like ruling out migraine and inner ear issues.

I was hoping to find out why this was happening to me, what exactly was causing it, and if there was a treatment option I haven’t explored, it may be that those aren’t answers I will ever have but I felt like my priorities and what I wanted from my experience didn’t match my specialists so it didn’t matter much.

I did learn a few new things regarding cardiology. My current EP Cardiologist basically wrote off most of my cardiac issues on my autonomic system. The Neurologist and Cardiologist at Mayo felt many of these issues were separate from my autonomic system and needed to be reevaluated (hmm, I see a new cardiologist in my future).

The question of the month has been if I recommend going to the Mayo Clinic…

UGH! I’d say that is incredibly unique to each person.

I hoped Mayo would be some medical utopia where I would find specific answers. I imagined a doctor who was going to be very knowledgeable about my specific ailment and empathize with how scary the symptoms are; much like I saw from the doctors at Vanderbilt in the Mystery Diagnosis segment on Linda Smith that I recently shared on my Fb page. (If you haven’t seen it I will include the link at the bottom). I was disappointed when I didn’t feel that was the case for me.

Do I recommend dysautonomia peeps going to Mayo? Yes but only if and here are the if’s…

If you can see Mayo as an option to conform medical issues and possibly find more information I think it is a wonderful option.

If the trip itself doesn’t pose a large financial strain I do think it is worthwhile.

Tips!

If you’re traveling to Rochester during the cold months you still won’t need your long underwear, at least not for the Mayo part of it all. You’ll leave your hotel and take the shuttle to Mayo, the shuttle is heated and carpeted so it is very warm. The shuttle will take you right to the doors of your building. You can check your coat on the first floor.

Your schedule is a guideline. If you are done with one appointment and have an hour before the next you can check in early and in my experience you’ll almost always be seen early. It is the same with appointments for the following days, if you are done with time to spare you can check in at future appointments and see if they can see you.

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If your Mayo Clinic app isn’t working (for me a letter was off of my email so I wasn’t receiving the emails to activate my app) call and get that taken care of. If you’re already at Mayo when you realize your app isn’t working ask at any desk and they’ll tell you where to go, off the cuff I want to say it was the business office in Ganda building and it took less than 5 minutes.

If you like burgers you’ll need to eat at Newt’s while you’re there.

Be realistic; it isn’t a medical utopia but it is a top notch medical facility where you will have a multitude of personalities working with you.

Bring your supplies… I mean your hobby supplies. As much as you’ll be busy busy busy there was also more downtime than I am used to. Luckily my hobby is reading so I was able to download books as I went. I think I read three books that week.

The standard answer to the question of how long you can expect your stay to be seems to be 3 to 5 days however most people who I know had appointments spread over 5 to 7. My appointments were over 6 days and I only made arrangements for childcare for a Monday through Friday stay. At the neurologists desk said they would do a phone consult for my final appointment. When I called to confirm when I should expect the call the neurologists secretary said he doesn’t do telephone consults. They do however mail you everything including final notes from the mail doctor regarding all of your testing and appointments. You may want to consider staying a bit longer then the time-frame you’re given.

Mayo Day One

Mayo Testing

Other Just Mildly Medicated Posts to check out

Being thankful when chronically ill

Tietze Syndrome… OUCH

and

Mystery Diagnosis segment on Linda Smith

 

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7 Responses

  1. Anna Brawders says:

    Wow! That was a lot of testing in a few days. I would definitely find a new cardiologist. It’s interesting how high your systolic BP got with no rise in your diastolic. My cardiologist has been great with everything! I hope you find a good one to help you sort things out. Let’s catch up soon.

  2. Andi Case says:

    Carrie, We are not big fans of Mayo. They MISSED my daughter’s POTS diagnosis. Didn’t Mayo DEFINE POTS? They were looking for epilepsy and when they didn’t find it, they sent her home! She has convulsive syncope (looks like seizures) and when she had a spell they told us it didn’t register on EKG and to go home and that she could DRIVE. Um, I think NOT! Her current neurologist stood with her while he repeated autonomic testing and watched as it was conducted. He shook his head and said her stats were all over the place and muttered out loud, “How did they miss this?” I like how you say that you were expecting it to be a “medical utopia.” We were too and instead walked away with a giant medical bill and no answers. I know Mayo is a good place for many — it just wasn’t for us. Take care!

  3. Keri says:

    I was wondering since you were borderline on the ttt, had they dehydrated you before the test (standard practice) and did they have you off the midodrine?

  4. amy says:

    My son is 13 and was told he has POTS. We have so many symptoms and it seems like no one cares. Most neurologist will not see him because he is 13, our experience at Childrens hospital hasn’t been great. They said he has a mental disorder. Now we are having convulsions and he passes out 5 to 10 times a day. Im so overwhelmed. We were thinking of going to Mayo. I’m so frustrated.We are going to school he passes out multiple times a day at school. Just need someone who has heard of this and wants to help us.

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