Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.


Written by Katie. Posted in Ehlers-Danlos Appointments

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So, I think this merits it’s own special blog post.  After I got home from Fort Wayne today from getting a T9 nerve block, I had a message on my phone to call the famous Dr. Tinkle’s office. 

To back up, when I thought I was going to be diagnosed with Ehlers Danlos, I got back to hard core researching, and realized that Dr. Brad Tinkle is pretty much a God to EDS patients.  He has written two books about it to help people understand the complexity of the disorder.  He wrote these two books as handbooks for family, the person diagnosed, or for other doctors.  I, of course, immediately ordered both books and have read them a couple of times already.  They are so easy to read, and they help me understand how Ehlers Danlos can/is effecting many different parts of my body.  The books also give many helpful ways to manage the disorder depending on the symptoms and the body systems effected.  Dr. Tinkle is a geneticist and is the co-director of the Ehlers Danlos clinic at Cincinnati’s Children Hospital.  He speaks all over the world about EDS.

So then I went into stalker mode and I emailed Dr. Tinkle to ask a few questions-mainly if he sees adults since he works at the Children’s Hospital.  I didn’t think I would ever hear back, but I thought it was worth a try.  Well, he emailed me back the next day (a Saturday) and told me that he does see adults and I should come see him.  He said I should make an appointment now, since it takes a long time to get in.  He explained that he helps with a treatment plan once an EDS or another connective tissue diagnosis has been made.

Well, he was right about taking a while to get in.  I called a month ago, and up until today my appointment was for February 28th.  I have been calling each day to see if there have been any cancellations, with no luck.  I actually counted the weeks in the car on the way to Fort Wayne today and told my Dad I still had 13 weeks.

With my confirmed Ehlers Danlos diagnosis made in Fort Wayne, Larry (Dr. Nassar) went into miracle worker mode and called and spoke to Dr. Tinkle himself last Monday.  Dr. Tinkle explained some of the disorder to him, and said to call the woman in charge of the connective tissue clinic and they would see what they could do.  I called last Wednesday and did not hear anything which did not surprise me since it was a holiday weekend.

Sooo, that brings me to today.  I called Dr. Tinkle’s office back after I listened to the message and the person I talked to asked if I could come on December 9th!  Next week! 10 days instead of 13 weeks! I said I would MAKE it work. 

So it is set.  Brad and I will be going to Cincinnati next Wednesday night.  We will be spending the night at my Aunt Mada and Uncle Brock’s house.  Thursday morning at 10:30 I meet with an Ehlers Danlos physical therapist who works with Dr. Tinkle.  Then I am seeing Dr. Tinkle at 3:30.  I am his last patient of the day.  They said to plan on being there for a while since the first visits are usually long ones.  So we will probably stay at my Aunt and Uncle’s house again and come home Friday.  I wish I could bring a video camera and at least tape the physical therapy part so I can bring it to my therapist here.  I will have to check on that…

When I got off of the phone I felt like I had won the lottery.  Is that sad? 🙂

If you want to read more about the famous Dr. Tinkle, here is a link to his bio:


You can also find his books here and here.

Hopefully I will come away with at least a start of a plan of action to show Ehlers Danlos whose boss!

I feel pretty lucky tonight to have so many people in my corner.

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