Diagnosed with Ehlers-Danlos Syndrome

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Diagnosed with Ehlers-Danlos Syndrome

Postby YLAURIE » Thu Jun 07, 2007 12:55 pm

Hi all! I posted for my first time 1 week ago today. I have gotten great response through replies here on the board, through PM's and emails. I just want to say thanks to all that replied to me.

I went for my appointment in Baltimore MD. on Tuesday to see Dr. Francomano, she diagnosed me with classical type EDS. I am adding a link to my blog which has more links with more information about EDS. I hope this information can help someone out there looking for answers to some unanswered questions.

Laurie
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Postby kathymichelle » Thu Jun 07, 2007 1:34 pm

Laurie, your blog is wonderful, your kids are beautiful!

I wish you the best, and I totally understand. I have all but the syrinx.

Take care and be well.
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Postby YLAURIE » Thu Jun 07, 2007 1:34 pm

http://laurieyeh.blogspot.com/

I forgot the link.I did the same thing last time. :?
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Postby kathymichelle » Thu Jun 07, 2007 1:39 pm

Laurie, in the message box there is a www and that will take us to your blog...just a little FYI..thought you would like to know and others too!

Best to you!
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Postby Janice » Thu Jun 07, 2007 2:46 pm

Laurie,

Thanks for sharing. I pray all goes well for you in your future treatment and decisions.

Take care and GOD Bless!

Janice
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Postby cash71 » Fri Jun 08, 2007 9:50 am

Hi Laurie,

Thanks so much for the link to you blog. It is really informative and well done. After reading your blog I was inspired to finally watch the video on the TCI website entitle EDS conference. I really didn't think it applied to me, but after watching the video now I'm not so sure. I can do a lot of what the girl demonstrates in the video. But I thought this was normal. I can dislocate my rt hip. I thought everyone could. funny when you grow up with something you assume its normal. I also naturally hyperextend my elbows and knees and have poor wound healing, tonnes of scars and bruise easy. So I guess I'll see what Dr. B has to say about it all. Might be another piece to my puzzle and that would be a good thing :D

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby prism » Fri Jun 08, 2007 11:27 am

Hi,

Nice to meet you- Your blog is GrEAT! I also have EDS. Are you aware of the National Ehlers Danlos Foundation? If you have questions about EDS the on-line group there is pretty great. People with EDS really need to have surgeons who understand the fragility of their connective tissue-- (I thought mine did, but I have really wondered since my heart surgery :shock: )
So, you might want to keep that in mind.
Your surgery date is coming up really fast! I so wish you the best.
take care** prism
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Postby YLAURIE » Sat Jun 09, 2007 5:41 pm

Hello Everyone! Thanks for the replies.

KathyMichelle, Thanks for the comment about my boys, I also think they are quite the lookers. Also thanks for the info on the www, I did add that but I guess I forgot.

Cash,
I too read on here and other websites about people going to TCI and being diagnosed with EDS, I did not think I would be diagnosed. I scored a 6/9 on the Beighton scale. http://www.charityadvantage.com/Milwauk ... bility.asp

Prism,
I looked up N.E.D.F. Thanks! You were right. Lots of info. I did look before, but it was not added to my favorites. I'm going to sign up for the online group. I also think The Chiari Institue is aware of EDS, they did diagnose me. I do hope this is the case.

Janice,
Thank you for the prayers! I appreciate them all. God knows I need the prayers right now.

Everyone else thank you for taking the time, reading my post and looking at my blog.
Take Care
Laurie
http://laurieyeh.blogspot.com/
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Postby Gracie Rose » Sat Jun 09, 2007 5:57 pm

Hi,

I loved your blog, I could have written it !!! I have all the things you have and have already been de-tethered, decompressed and fused. If you have any concerns please email me.

My surgeries were very successful, but life is different now. I am trying to get used to a new normal. The de-tethering your having was very dramatic for me, I hope the same for you.

Lisa
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Postby kathymichelle » Sat Jun 09, 2007 7:58 pm

Laurie, me too! 6/9 but when I got back there for my check back after surgery they said 7/9 on the Beighton scale. I think it was the wrist popping stuff. LOL.

I agree sons are great!

You have done some good work, the links are great.
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Postby YLAURIE » Sun Jun 10, 2007 12:39 am

Hi Everyone! Thank you for all of your replies. You are such a wonderful group of people. This is going to be short. I am exhausted, it is late here and I am off to bed. I hope you all had a great day! Take care.
Laurie
http://laurieyeh.blogspot.com/
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Postby specialmomx2 » Sun Jun 10, 2007 9:22 am

Laurie,

belated welcome to the board.

We have similar issues, I think: I have EDS (I score 9 on the beighton scale, so it's probably the hypermobility type), RO, and SM. I don't have ACM, CCI or TCS. I have been through the TCI process, but am not considered a surgical candidate. They cannot tell me the reason for my syrinx.


Good luck with your surgery in June.

-Paula
"idiopathic" SM T3-T5 taking 50% of available space. Ehlers-Danlos Syndrome, Cervical stenosis, DDD, metabolic issues including reactive hypoglycemia.

check out my blog: www.onesickmother.com
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