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My Diagnosis One Year Later   Message List  
Reply | Forward Message #458 of 643 |
Re: [Ehlers Danlos Support Club] My Diagnosis One Year Later

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 some sort involving a dye.
My main areas of pain are similar to your, but my knees and thumbs (lower 2
joints, especially by my wrist) are the worst area. My left wrist also
disassociates, as do my thumbs. At one point I could hardly turn the pages of a
book. Right now my knees are going through a really bad time, and don't want to
respond. My "symptoms" became so bad I had to resign my job. Since then, I've
been improving steadily in my general health. And my thumbs have improved
without filing and other tasks involving my thumb/finger grasping. When I over
use them, I do still suffer.

As both my natural parents and only sibling are gone, I don't have any more
than remembered observation to go by. My father, I know, had very fragile skin,
and bruised easily. I know my mother was probably not double jointed. My
brother probably was to a degree. (Both of us have thumbs that bend backward at
nearly a 90-degree angle.) My mother was arthritic early. I don't recall that
my father was. So it is somewhat a mystery. However, I think I do tend to take
after my father more than my mother. But then, genetics are a strange thing. I
did mention to my daughter's doctor when she was having her second child that I
do have this condition. I don't know if she'll remember it down the road or
not. And I pray her children don't get this.

The diagnosis didn't change anything. I stopped going to my chiropractor
because I was worried it would make things worse. Recently I've gone back to a
different chiropractor. She uses a lot of nutrition to strengthen the body
along with her treatments. She uses a different testing method to test and
score the body as to where the problem is that day. It seems more thorough. I
know it sounds like so much voo doo to a lot of people, but I tested her by not
really sharing what my problems were when I went in. She hit them on the nose.
She won't release us from the appointment until she is satisfied with the
results. She is an extreemly positive influence in my life now. I completely
trust her. My knees are slowly responding. But at least they are responding.
The problem is, there are no chiropractors I know of in Iowa that do that. I'm
lucky I only live about an hour away from Dr. Lund in Prairie du Chein, WI. She
has done a lot of studying to be able to do
this type of testing. The testing, by the way, was developed by a wide variety
of doctors, both chiropractic and medical...and even dental.

I really believe staying positive and visualizing myself as getting better has
helped me a great deal. Best of luck to everyone.


Ann
Northeast Iowa






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Mon Nov 13, 2006 2:22 pm

annsanity2go
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Message #458 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
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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...
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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
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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
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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...
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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
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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...
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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
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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...
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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
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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
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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
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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...
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Nov 16, 2006
11:01 pm

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