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  1. #61
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  2. The Following User Says Thank You to PurpleButterfly4 For This Useful Post:

    BH-KatiesMum  (12-05-2014)

  3. #62
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    Mama, thanks for your recommendation. We are now being tested for EDS, the genetic counsellor I saw last week says that with my family history, symptoms and my sons symptoms we must absolutely be checked out of it!

    A few of the red flags are - I have early onset arthritis, Iwas very double jointed as a kid and also very accident prone- lots of breaks, sprains and tendon problems. I have esonphilic esophagitis (you have an 8 fold increase of that in EDS patients), I look much younger than I am, hardly any stretch marks etc, my dad died young of an aortic aneurysm and had "marfanoid features" (ticks a large number of the marfans, vascular EDS boxes), all of my sons are double jointed and one has chronic joint pains.

    So thanks again for mentioning it, I doubt I would have connected the dots to be honest.

    Quote Originally Posted by mamaof4 View Post
    beebs, have you thought about being checked for what I have? It's called Ehlers-Danlos Syndrome, and there are six (I think) types, but sometimes you can have some symptoms of more than one type.
    Autoimmune symptoms along with the arthritis/connective tissue issues are a big part of it, so can problems with your oesophagus and/or stomach.

    I have arthritis in my joints from it, and huge issues with my immune system. EDS Type 3 (one of the ones I have) causes problems with connective tissue, and your body doesn't produce collagen properly. I have had severe ulcers through my stomach and up my oesophagus for around 5 years now...Iv'e been on the waiting list for surgery for that amount of time

    Got to go and bath bubba, but will find a link to an EDS site for you

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    PurpleButterfly4  (20-05-2014)

  5. #63
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    I think it might be EDS week, but I could be wrong- it might have just passed.

    Quote Originally Posted by PurpleButterfly4 View Post
    Happy Awareness day people!
    Attachment 54448

    Attachment 54449

  6. #64
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    Good you're being tested @beebs

    I visited a Rheumatologist this morning. He is 99% sure I've got early stages of Rheumatoid arthritis and Fibromyalgia.
    I'm going for a MRI to help him confirm it is RA. I also have to get more bloods.
    I actually had a inkling the increased pain and fatigue was RA so good in a way that it's basically confirmed.
    I've started a medication to see if that will help. If it does help at all he said he will try me on the stronger and longer lasting medication for the RA.
    I've gotta go back in a month to see him.

  7. #65
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    What meds are you on? Plaquenil?

    Quote Originally Posted by PurpleButterfly4 View Post
    Good you're being tested @beebs

    I visited a Rheumatologist this morning. He is 99% sure I've got early stages of Rheumatoid arthritis and Fibromyalgia.
    I'm going for a MRI to help him confirm it is RA. I also have to get more bloods.
    I actually had a inkling the increased pain and fatigue was RA so good in a way that it's basically confirmed.
    I've started a medication to see if that will help. If it does help at all he said he will try me on the stronger and longer lasting medication for the RA.
    I've gotta go back in a month to see him.

  8. #66
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    I will pop in here and say hello.

    I have the double whammy of EDS type 1 and also Marfans syndrome. I don't like talking about my issues much but quite often i am in a lot of pain.

    Nice to see some other EDS sufferers.

  9. #67
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    Quote Originally Posted by beebs View Post
    What meds are you on? Plaquenil?
    Yep that's one he's got me taking now
    Have you had it?

  10. #68
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    Hi tastychicken.
    Feel free to come here for support or a vent anytime. Gentle hugs to you

  11. #69
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    I took it, and ended up getting a reaction to it, which caused a dizziness, like being on the rough seas on a boat, so they halved the dose and it was ok. I ended up going off it when I found out I was pregnant.

    Quote Originally Posted by PurpleButterfly4 View Post
    Yep that's one he's got me taking now
    Have you had it?

  12. #70
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    Hello Lovelies!
    Just stumbled across this thread and SO excited to find other EDS Warriors!

    Little bit about me:
    23, TTC# 1 Miracle Baby.
    Diagnosis include:
    Ehlers Danlos Syndrome-Type 3(Hypermobility)
    Postural Orthostatic Tachycardia
    Neurocardiogenic Syncope
    Fibromyalgia Syndrome
    Hashimotos Disease
    Kidney Reflux
    and most recently Polycystic Ovary Syndrome
    (these are just my main ones)

    Been TTC since October 2013.
    just finished 1st cycle of Provera & Clomid 50mg but no Ov.


    Really looking for people who have experienced Pregnancy with illnesses experiences and advice!

    Anyway Thanks for having me!

    <3


 

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