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    #16
    You should be seeing a cardio for the dysautonomia. Who performed your tilt table test? That is usually done by a cardio. Also a warning, if you do have eds you shouldn't get tilt table tests because of increased risk of your heart stopping on the table.*

    Have you seen a geneticist yet? To be evaluated for eds you need to see a geneticist. What genetic tests did you get? There are blood tests for some types of eds, but because all the genes haven't been identified yet they aren't conclusive for those types and there are types that have no testing yet. There are very few labs that do the testing for EDS and it takes a really long time to come back. Because of the typing not being conclusive, most of the diagnosis is based on clinical signs and so it's important to discuss with a geneticist. I agree that a university hospital is your best bet for treatment. If you have eds there are a lot of risks involved with surgery that need to be considered. Also specific precautions to be taken due to the degenerative nature, as well as yearly testing such as echocardiogram because of the risk of vascular dilation and dissection.*

    I hope you get everything figured out!
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

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      #17
      I had the tilt table test recently at a hospital, and the poor mans tilt with no meds, in the Drs office just for fun I guess.
      Iv had a lot of surgeries over a lifetime. some funky scars.

      I have noticed I feel my heart in my belly lately. I asked the gp for heart tests, but she is wanting to see about the cerivical thing. I totally wasnt planning on having to find a neurologist, but was expecting to get referred to a surgeon.

      I have a sister and my niece who have seen a genetics Dr but not tested for that. Im not sure what I was tested for. some kind of DNA tests. my two sisters, son and daughter and niece all have loose joints, dislocations, my sister, my mom and I had dislocated lumbar vertebra and pelvis fractures. also maybe why my shoulders are toast. I thought everyone using crutches got bad shoulders, but mine have the hollow spot in the right place for the ehlers thing, and this swan fingers thing.
      anyway there is the huge list, and the only thing not a yes is stretchy shin and a positive dna test.

      what I meant by blood work is I get low sodium n potassium, and I have very low red blood volume, which started long before the pots started.

      thank you, I am trying very hard to feel better. Im also trying to wrap my head around that stem cells won't help me one bit will they?

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        #18
        There are a LOT of different symptoms for EDS since most of your body is connective tissue, and which symptoms you have fall in line somewhat with what type of eds it is though there can be crossover.

        Since EDS is degenerative, if you have it having had successful surgeries in the past is not a guarantee that surgery is safe. The diagnosis needs to be known and discussed relative to a prospective surgery. Some eds specific concerns with surgery are related to anesthesia difficulties, frail tissues tearing during surgery, delayed healing, stitches tearing, increased scarring, and vascular complications.

        If you have hypermobile eds you wouldn't have stetchy skin typically. Stretchy skin is one of the signs of classical type eds. Who was it that suggested eds as a possibility? I'm really confused by the lack of proper care it seems you're getting! You definitely need to be seeing a cardio for dysautonomia, that's just a given and it doesn't matter what else is going on. Dysautonomia is primarily a cardiac condition. And if your pots isn't being properly controlled it stresses the heart.

        EDS is hereditary but can also occur as de novo mutations, so with your family history it's possible there's eds but even if the others don't have it that doesn't rule out the possibility that you have it. And like I said, not all of the genes involved in eds have been typed yet so the testing is not definitive. It sounds like you're thinking hypermobile eds (type III) by the joint issues, heds cannot be diagnosed by blood/dna testing at all right now. Only classical (types I and II), vascular (type IV), and some of the super rare types. You'd need to see a geneticist to determine if the test is worthwhile, but if they are considering you for hypermobile eds they won't perform the blood test.

        I'm not sure what you're asking about stem cells. If you mean will they help eds it's possible. Stem cells may be able to cure genetic diseases at some point. Currently there is absolutely no research going on with stem cells and EDS. Since it's a rare disorder, there is not much research compared to more common diseases. There are no specific treatments for EDS. Treatment is based on the management of symptoms and prevention of complications. If you have any EDS questions I'm here, and if you're diagnosed I have some literature I can send you. There is also literature available for free on the*ednf.org*website, including some important stuff to share with physicians. I was diagnosed in 2001 and have kept up with developments.
        Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

        I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

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          #19
          I am the only baby that lived who had obvious birth defectss. my moms sisters had a couple babies with birth defects who did not live. if it is the eds, everyone in my family is affected. all my mothers children, and my one of my mothers sisters children. both of mine. both of my brothers children
          I believe my son because of the loose bones, pigeon chest, and he always had to have his wounds restitched the day he got his stitches out. I heal fast, but thick fragile scarring.

          I am just learning about this condition, know very little so far.
          Do you have it? do you have pots? if so what are you doing for it? what about sleeping?

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            #20
            EDS is autosomnal dominant, so it's possible for much of your family to have it. As for everyone that would be pretty unusual but not impossible. It's a 50/50 chance of passing it on when someone has it, and if someone does not have it they cannot pass it on (only a very rare type of eds is recessive where it can hide and require 2 carriers.)

            I was initially diagnosed with hypermobile type EDS in 2001 but with a lot of skin symptoms. However when I started seeing a new geneticist who is a specialist in eds he said he's sure I have classical type and recently got approval from medicaid for the blood test. I was diagnosed with dysautonomia (different type than pots, mine is called inappropriate sinus tachycardia) in 2007.

            What I'm doing for it would be quite a long list! As I said most of the body is connective tissue so there's a huge range of possible symptoms. I have problems with my skin, muscles, ligaments and tendons, nerve damage from dislocations, GI problems, bowel/bladder/sexual problems, circulatory/vascular probems... I also have other diagnosed conditions going on with some overlap, and then some undiagnosed stuff like I posted about in my cervical instability thread.

            Some of the things I do are see a lot of specialists, lots of regular testing to follow issues and catch possible issues early, cardiac event monitoring, joint bracing and taping, forearm crutch use or the wheelchair, assistance of my service dog, medications and pain management, physical therapy. Like I said before when it comes to EDS there are no standard treatments, treatments are based on the symptoms that are being experienced. The things that are more widespread among eds patients would be preventative concerns such as the surgery stuff, educating drs, yearly echocardiogram, and things to avoid (like tilt table testing.)

            Do you have a specific question regarding sleep? Or just in general asking what helps for me? Because that's going to be another long answer lol. I don't mind answering though, I'm an open book about the eds if it can help someone else!
            Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

            I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

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              #21
              I used forearm crutches for years. one shoulder subluxed the other dislocates easily. the crutches are very hard on your shoulders. well they were on mine anyway.

              The tilt table test seemed to be very helpful in figuring out what was making me pass out. the test was positive before they put the med in the iv. once the meds were in, my heart rate went extremely high. very hard not to pass out. It was a miserable test.

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                #22
                There are ways to diagnose dysautonomia without the tilt table test. If you don't have EDS you don't have to worry about the test but if you do you should never have it done again due to the risk of your heart stopping during the test.

                Yes, forearm crutches are hard on your shoulders! I find my chair easier on my shoulders than the crutches, and I have special shock absorbing and ergonomic forearm crutches.

                Joint bracing can be incredibly helpful for joint stability, but should not be used if not needed because by limiting range of motion they can further weaken the joint. With eds though the repeated subluxations and dislocations weaken joints as well. And with eds the amount of subluxations and dislocations experienced ranges greatly.
                Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

                I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

                Comment


                  #23
                  ill ask to see a cardiologist.
                  what is really an awful feeling is this dread feeling. like you are waiting for your dad to get home so he can beat your ass. its in the body though. its a terrible feeling. anyway I feel it is connected to my heartbeat. always feel it the day before or the day of passing out. the tilt test did make me feel like my heart would stop. it was not nice at all.

                  I read a dog could detect a pots episode. My roomie says no to the dog though.

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