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Amers
Spoonie in Training
Joined: Sun Apr 20, 2008 1:17 am Posts: 8
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 A sad road
i recently found out after 2 years unanwsered questions, countless visits to the er, trips to 3 major hospitals in the US, 15 medications, and even a heart surgery, that i all i had was EDS. Doctors are not aware of this condition saddly. I was told last week that i will not be able to have children, and that the medication that the other doctors put me on caused major problems to my body, that they are only effective if you are 40+. It has been a long sad road. I have felt alone in this situation. But i will not give up on informing people who are having simular symtoms as POT ans EDS, not to give up and just go with what your Family doctor said...you know your body.. you may not look sick, and your test may come back normal. but only you will know that they are not right. just because u are a women you are not having a panic attack, it isn;t all in your head. sometimes, even most of the time the doctor can be wrong. you have to fight for it. i am young but these two years has opened my eyes to a whole new light. i am very happy that there is a site like this for people with what we have...we are not alone. _amers
_________________ Amers-
19 - EDS + everything that comes in that fun basket
~Gravity Is The Only Thing You Can Blame From Holding You Down~
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| Sun Apr 20, 2008 1:43 am |
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RSDinOz
Serving Spoon
Joined: Sun Apr 06, 2008 7:20 pm Posts: 2796 Location: Australia
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 Re: A sad road
Amers,
Sorry to hear about your hard time lately and the added issues with doc precribing harmful medications etc...
The all in your head etc things are VERY common on here, for many with invisible ilnesses etc, and yes for some reason us women are more often classed as hysterical or hypocondriacs etc.
_________________ Dx -RSD/CRPS1; Migraines, CDH's; Hearing Loss; Hypermobility; HLA B27+; Multiple Allergies; Eczema; IBS; Raynaud's; JRA; Seronegative Spondyloarthritis; Tinnitus; Myoclonus/ Fasciculations and More...
PLEASE Check out my Scroll for my mature Dragons and Eggs etc on the Parade
<- Please Click on My Eggs & Hatchlings
Last edited by RSDinOz on Thu Sep 04, 2008 11:07 pm, edited 1 time in total.
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| Sun Apr 20, 2008 6:12 am |
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ReineDeLaSeine14
Crystal Spoon
Joined: Thu Jan 11, 2007 9:25 pm Posts: 9262 Location: Connecticut...part-time Texan...and French at heart :)
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 Re: A sad road
I have Classical EDS myself...I was advised to not have children either.
I knew something was wrong...and my mom and sister told me that it was normal and that I was just making a big fuss (they have EDS too) but it always seemed like the world was going a lot faster than I...I just couldn't keep up with it.
After I turned 18 things got a lot worse...and so began the diagnostic process. I was diagnosed with EDS after seven months...of PT, appointments...because i talked to people here and I KNEW. I was diagnosed after fifteen minutes with the geneticist. I have been diagnosed with Fibro...with Somatoform Disorder (which has been taken off thank God) and so many little illnesses that came together into my EDS.
I'm glad you finally got your diagnosis...it certainly changes everything doesn't it?
_________________ ~Stephanie~
Unknown genetic disorder causing EDS, Dysautonomia, Asperger's Syndrome and other wacky things (ie. seizures, vision impairments, JRA) Also have Bipolar I, Borderline Personality Disorder, EDNOS and some other stuff.
I am rarely here so if you wish to speak to me please use my email provided in my profile. Thanks
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| Sun Apr 20, 2008 10:09 am |
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Amers
Spoonie in Training
Joined: Sun Apr 20, 2008 1:17 am Posts: 8
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 Re: A sad road
The said for sure hyperMoblity, but my blood pools pretty bad randomly, and out of no where i my heart rate will get up to 190. they said since the change in blood while i am pregnant, it would do much more harm on my body to my major organs and they are afraid of my fainting spells i get from the high heart rate with the blood pooling in my limbs with also my blood pressure that drops in the 60's. The funny thing is it is all due to my loose ligiments and collegen, i have had my shoulder done 3 years ago and they even saw / said they never saw what i had before, but never thought ne thing about it. So with the EDS the tissue never healed right. But it made a good battle scar! 
_________________ Amers-
19 - EDS + everything that comes in that fun basket
~Gravity Is The Only Thing You Can Blame From Holding You Down~
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| Sun Apr 20, 2008 10:14 am |
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Mavesse
Spoonie in Training
Joined: Mon Feb 25, 2008 12:04 am Posts: 44
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 Re: A sad road
Here's hoping the worst is behind you. Also, I really admire your commitment to share information. Sometimes, it just feels like a miracle the way us spoonies can connect and help one another. 
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| Sun Apr 20, 2008 10:44 am |
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reactive
Baby Spoon
Joined: Sun Dec 10, 2006 8:16 pm Posts: 349
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 Re: A sad road
Quote: Here's hoping the worst is behind you. Nice sentiment - I'll second it. Also, as bad as it's been, many people have had to endure far more years of struggle prior to correct diagnosis.
_________________ "In your hearts, you know he's right."
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| Sun Apr 20, 2008 11:17 am |
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ReineDeLaSeine14
Crystal Spoon
Joined: Thu Jan 11, 2007 9:25 pm Posts: 9262 Location: Connecticut...part-time Texan...and French at heart :)
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 Re: A sad road
Hey Amers...I was 19 when I was diagnosed with EDS...I'm 20 now 
_________________ ~Stephanie~
Unknown genetic disorder causing EDS, Dysautonomia, Asperger's Syndrome and other wacky things (ie. seizures, vision impairments, JRA) Also have Bipolar I, Borderline Personality Disorder, EDNOS and some other stuff.
I am rarely here so if you wish to speak to me please use my email provided in my profile. Thanks
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| Sun Apr 20, 2008 12:04 pm |
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Amers
Spoonie in Training
Joined: Sun Apr 20, 2008 1:17 am Posts: 8
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 Re: A sad road
oh man us young birds! haha well at least we will never wrinkle 
_________________ Amers-
19 - EDS + everything that comes in that fun basket
~Gravity Is The Only Thing You Can Blame From Holding You Down~
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| Sun Apr 20, 2008 8:24 pm |
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psalm121999
Dessert Spoon
Joined: Tue Sep 18, 2007 6:53 am Posts: 579 Location: Ohio, US
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 Re: A sad road
sorry for your troubles... it's amazing to me everytime I hear another one of "us" share their exasperating experience of "it's all in your head" before getting the proper diagnosis. >shakes head< Before you write off having kids... find a Dr who specializes in EDS and or POTS... maybe with the right medical attention your outcome can be more favorable. I didn't have a diagnosis before I had my kids... and I have two... I have had symptoms all my life (that looking back now are pretty obvious and I want to pop the Dr in the head for not picking up on them) but they didn't become disabling for me until six years ago. Keep a smile on your face... it helps everything else seem better. 
_________________ Lisa
Autonomic Neuropathy with POTS, Joint Hypermobility Syndrome, Fibromyalgia, Migraines, Sleep Apnea, Raynauds...
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| Mon Apr 21, 2008 7:15 am |
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stacekins
Volunteer Staff Member
Joined: Mon Jun 11, 2007 11:48 pm Posts: 955 Location: Michigan
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 Re: A sad road
I'm glad that you got a Dx and I hope that things go better for you. I have Classical EDS. I was dx'd when I was 19 and am now 21. I was originally dx with hypermobility type, but I went to Baltimore a few weeks ago to see Dr. Francomano (the best specialist ever, at least in my opinion  ) and she changed the type. Classical seems to fit me better than Type III. As far as having kids goes, I would see a specialist and take some time to think it over. I've been told yes and no to having kids and now I've kinda put the ball in my court and it really just depends on how well managed my EDS is when the time comes and I want to have kids. I desperately wanna have kids of my own some day, but I'm not going to kill myself trying to make that dream a reality, so I always look at the fact that there are millions of kids without parents out there and I could love them just as much as one of my own. So adoption for me is always still an option.
_________________ Staci Jo *22*
Life's not waiting for the storm to pass, its learning to dance in the rain. (but gee I sure with the storm would go away for just a little bit!!!)
Classical EDS, Celiac Disease, FMS, PCOS, IBS, Migraines, GI problems, Bulging disk & DDD * L4-L5, Depression, Anxiety
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| Tue Apr 22, 2008 7:58 am |
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Amers
Spoonie in Training
Joined: Sun Apr 20, 2008 1:17 am Posts: 8
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 Re: A sad road
Wow i didn't know how many people actually have the same stories, and care also. i am soo happpy to have found this website. it has given me such a great feeling that i am not alone . So thankyou
_________________ Amers-
19 - EDS + everything that comes in that fun basket
~Gravity Is The Only Thing You Can Blame From Holding You Down~
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| Tue Apr 22, 2008 10:05 pm |
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iGraham
Spoonie in Training
Joined: Fri Apr 11, 2008 8:16 am Posts: 215 Location: Lock Teign, Glen Devon, Scotland
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 Re: A sad road
_________________ Neuropathy, iBuprofen Allergy, weird weird scar tissue Diclofenac for whatever, Amitriptyline and Tramadol when it really hurts. Some say, he wrestles wild animals in his office, and that his deodorant comes from a live skunk.
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| Wed Apr 23, 2008 5:57 am |
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