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The Mayo Clinic missed my Ehlers-Danlos Syndrome (EDS) and several other medical conditions

In an earlier blog post, "What the Mayo Clinic missed...", I discussed some conditions that I later was diagnosed with that the Mayo Clinic did not look for while I was there.

It turns out that they missed even more than we had previously thought. They overlooked my Ehlers-Danlos syndrome, which is a connective tissue disorder that can cause a wide variety of health problems (and for me can explain almost all of "random" medical problems that kept occuring).

Did Mayo evaluate me for Ehlers-Danlos Syndrome?

When we traveled to Mayo 2 years ago, I had not yet heard of EDS. If I had known what it was, I am sure I would have asked about it. During my initial appointment with my neurologist there, she asked me, "can you hyper-extend your elbows"? (Without physically checking) I replied, "no", because at the time I didn't know that I could. That was the extent of my evaluation for EDS at the Mayo Clinic.

I recently looked at my report from that appointment and it said "0/9 on the Beighton Scale". She didn't actually assess any of the beighton scale with me. Well, it turns out that I can hyper-extend both of my elbows, and I actually score a 6/9 on the Beighton Scale.

For those of you that don't know what the Beighton Scale is, it's a scale to assess the hypermobility of some of your joints (arms, knees, fingers). It is a small part of the EDS diagnostic process.


What else did Mayo miss for me?

They missed intracranial hypertension (no spinal tap was done), chiari malformation (no brain MRI was done), cranio-cervical instability, sleep disorder, and more. Basically all they diagnosed me with was POTS, low iron levels, and few mildly leaky heart valves.

One thing to note about Mayo + cranio-cervical instability: They do not have an informational webpage about this condition, which makes me wonder if they even diagnose/treat/recognize it there.

They do recognize and treat chiari, but (to my knowledge) they are not considered to be specialists or top in the field. Please feel free to let me know in the comments if I am wrong there!

Now, you can make what you want my story, but just know that I am not the first person that Mayo has missed EDS (and other conditions) in. They are a fantastic hospital that has helped millions of people, but they are by no means perfect.

My personal opinion is this: I don't think the Mayo Clinic is the best resource for most EDS patients. There are some that are satisfied with their care there, but most that I've talked to have opted to find help elsewhere. I'm sure there are exceptions, and would be interested to hear your experience and thoughts on the matter.

Sending love and prayers to those of you that are sick in the difficult process of trying to find out what is going on with your health. Know that we all were once there, and that you are not alone. Don't give up.

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