Tuesday, January 5, 2010

Ehlers Danlos

Around a year ago I began having issues with my elbow. I would go to straighten it and there would be immense pain, a pop, and then it would straighten. I was told it was due to the Ehlers-Danlos and was placed in physical and occupational therapy. For the past year I've been in and out of PT and OT, used hot and cold treatments, compression therapy, and drug therapy. My elbow, and both wrists have not been able to be rehabilitated. I DID rehabilitate my legs after losing my ability to walk last October. I've been trying to get an appt with Ortho to discuss surgery but they kept denying my referral. My doctor finally had me come back in to discuss other options, and took one look at my elbow and freaked out. He said it's pretty much completely destroyed. He thinks the joint is completely gone, the muscle, tendons, and ligaments are torn, and he's not sure they WILL be able to fix it. I have an MRI on Thursday to see the extent of the damage but he assured me if it can be fixed it will have to happen surgically. My wrists are not as bad and may require pins/wires, or a fusion.

11 comments:

  1. I think I've asked you these questions before, but I don't remember. Sorry. What type do you have? Is it hereditary? Will you do genetic testing to see if the kids have it?

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  2. The kind I have is type 3, or hypermobility. I may also have type 1 or Classical. The only difference between the two is classical can cause heart issues. For type 3 there is no genetic testing, and genetic testing only catches 50% of type 1. It IS hereditary, but it's true hereditary - I can only pass on the kind I have and not one of the more dangerous forms. We're pretty sure Anthony has it, so we're keeping an eye on him and will take precautions in the future so it doesn't get as bad as mine has.

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  3. Eep, I didn't know what EDS was until you wrote this and I googled it but I'm so sorry to see you suffering. :( Is it curable or do you just have to maintain it?

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  4. No, there is no cure, it's chromosomal. You can maintain, prevent, and strenghten. I managed to restrengthen my legs through intense physical therapy and hardly have issues. My arms have not been able to and will most likely require surgery.

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  5. i usually watch mystery diagnosis before bed,and the other night they had someone with EDS on. it made me think of you.

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  6. That just makes me cry to see how bad it is. I love you, babe. ~ Mom

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  7. :( Beth it breaks my heart to think about the pain you must be in. I'm so sorry you have to battle this every day.

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  8. Bethany,
    Just found your blog, I am sorry as well. So much has happened with you since our book club. I miss your smiling face. I hope you are well, and you know you can call me anytime.

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  9. you are so like your mom, just keep going and not let anything stop you from what needs to be done. It is very inspiring to listen to you on fb and espcially see the reality on this blog. It puts my health issues into perspective. Thanks for sharing. Debbie

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  10. I have EDS type II or III (waiting on tricare to give permission to a have DNA testing. You also have signss of Marfans, and EDS may be a misdiagnosis. Please consider contacting Dr. Dietz at Johns Hopkins Baltimore. He is great about getting back to people on these disorders and is the leading geneticist in the country. He is always willing to help educate doctors and assist in any way he can.

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