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ehlersdanlossupportclub · Ehlers Danlos Support Club - A place to talk about Ehlers Danlos Syndrome
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My Diagnosis One Year Later   Message List  
Reply | Forward Message #460 of 643 |
Re: [Ehlers Danlos Support Club] My Diagnosis One Year Later

Angie,


My heart goes out to you and your children. I am so sorry that when you
finally got the answers to your questions that it is something so serious. My
issues are so insignificant by comparison. Thank you for the advice though.
Could you continue to see Dr.s for your children. If you need a neurologist
there are many good ones here in jersey and in New york that I have heard
of.Let me know if there is any way I can be of assistance.

Thank you again for your kindness.


[Non-text portions of this message have been removed]
Wed Nov 15, 2006 6:47 am

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mlslng99
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Forward 		Message #460 of 643 |
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Hi I originally posted last July after being diagnosed by a Rheumatologist. I have seen an expert on EDS from Philadelphia who says I don't have EDS because I... 		Sandi
mlslng99
Offline Send Email 		Nov 10, 2006
5:03 am

Hi Sandi, do you get things like head ache's constant body pain or neck problems??? I do a ton of searching constantly and I have a few ideas but I need more...
angela salisbury
momofthreeha...
Offline Send Email 		Nov 10, 2006
3:26 pm

Angie, Thanks so much for replying. I am in the healthcare field here in New Jersey I work with many neurologists and I am an MRI tech so if there is...
MLSLNG99@...
mlslng99
Offline Send Email 		Nov 13, 2006
3:46 am

Hi, all, especially Sandi, Your case pretty much mirrors mine. They diagnosed me in pretty much the same way. To rule out heart anurisms they did a scan of...
Ann McCullough
annsanity2go
Offline Send Email 		Nov 13, 2006
2:22 pm

Hi Sandi, Very interesting! I have had a horrible day sorry. You know it is one of those days when you need a friend and nobody is home. Well we got kind...
angela salisbury
momofthreeha...
Offline Send Email 		Nov 14, 2006
1:36 am

Hi Sandi and Angie, I have been following your e-mails back and forth and just want to jump in and say hello and how sorry I am for the news you have just ...
linlouheg
Online Now Send Email 		Nov 15, 2006
4:34 pm

Hi Linda thank you! Yes most certianly I will take a look at any info! I am sorry to hear about your friends newborn. I was diagnoised with diabetes at age...
angela salisbury
momofthreeha...
Offline Send Email 		Nov 16, 2006
2:00 am

Angie, My heart goes out to you and your children. I am so sorry that when you finally got the answers to your questions that it is something so serious....
MLSLNG99@...
mlslng99
Offline Send Email 		Nov 15, 2006
7:01 am

Hi Sandi, Thank you. But we see only the best of the best neurolgist here at Detroit. We actually see a genetic neurologist. Yeah there is such a thing....
angela salisbury
momofthreeha...
Offline Send Email 		Nov 16, 2006
1:37 am

Hi Linda, Hi and thank you. How did u get your diagnosis? I didn't realize that u can have both Fibro and EDS. Can u make any suggestions regarding...
MLSLNG99@...
mlslng99
Offline Send Email 		Nov 16, 2006
4:08 am

... Sandi, Fibro and EDS are often seen together. In fact, there are even online groups and websites specifically devoted to people who have both. ...
Barbara Davis
uggen_davis
Online Now Send Email 		Nov 16, 2006
5:30 pm

Hi Angie. I am so glad that you found a Dr. that you are comfortable with. I think that is half the battle. I am not familiar with mitochondrial dx is that...
MLSLNG99@...
mlslng99
Offline Send Email 		Nov 16, 2006
4:21 am

Hi Sandi, Not to my knowledge. It is a cell abnomality. Sometimes these peopl that have this have red straking fibors in thier muscles so they are doing a...
angela salisbury
momofthreeha...
Offline Send Email 		Nov 16, 2006
11:01 pm

Thanks so much Barb. Sandi [Non-text portions of this message have been removed]...
MLSLNG99@...
mlslng99
Offline Send Email 		Nov 16, 2006
6:35 pm
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