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Any idea what's with my legs?

Oct 18, 2016 6:52 PM

HI, so I have a doctor's appointment this Friday and among looking into lupus and other issues I wanted my doctor to look into a problem I've always had with my legs that's getting worse.
My doctor said we are just starting the search and he ordered blood work just for basics but plans on going from there if the blood work comes back fine. that's just for my pain and fevers and stuff.
But I'm asking about my legs here because I wanted an idea what to suggest or bring up to my doctor about my legs. I stand and have always stood with my legs bend at the knee backwards since I was in kindergarten. I also walk with my knees touching they rub against each other and I kinda can walk straight I always wave to one side then the next. And my knees when I'm laying down seem off and bent and the knee caps look weird and sometimes feel like they are floating. So I wanted to know if anyone had something similar or had an idea what to suggest to my doctor. Because I know I don't have cerebral palsy but my husband has said I LOOK like I walk like I have it and I kinda stand like that. But that's it I just kinda look like it but I don't act like I have it because I don't have any other symptoms. I just wanna know if I should be in a wheel chair get leg braces get physically therapy or what because it's getting harder to walk. If I stand too long my legs swell and hurt later but if I walk too much they swell and my ankles and feet hurt. So it's such a tough balance of standing and walking and sitting because if I sit too long they hurt from not exercisin them....so any idea what this looks like or anyone else experience this or something similar?

Oct 18, 2016 6:53 PM

And here's when I'm laying down.

Oct 18, 2016 8:08 PM

I'm the same. I suspect I have Ehlers-Dahnlos, but need to get gp to refer me to specialist to confirm/deny.Basically when you're standing your knees are hyper-extended, which is why it's so painful. I sometimes have one knee bend completely the wrong way when I stand up, too, super-painful.

Oct 18, 2016 8:31 PM

I thought I had that too. I asked my old primary and she first had to look it up because she didn't know what it was. 2nd she just grabbed my hand and bent it back slightly and my arm and no you don't have it. But my new primary is much more knowledgeable and he seems more attentive and thorough. And the most infomation I've found is that hyperextended thing. And that's another reason I suspected eds. So I will revisit that idea with my new primary probably. I just wasn't sure since my only problem is my legs. But I've always been like thing. For as long as I can remember.

Oct 19, 2016 5:00 AM

It's more complex than a lot of gps think, so definitely worth doing some research of your own - look up symptoms, and make a list of what affect you. Might give you a better chance of dr taking you seriously.

Oct 19, 2016 1:54 PM

EDS is a very comlpex syndrome and many doctors only covered it in school for a very brief period. Sometimes only a week and then it's lumped in with other conditions as well. Please do look it up. Ehlers-Danlos is the proper spelling. A knowledgeable geneticist is the best person to make the diagnosis. There are seven (if I remember right) different forms of it with vascular being the most dangerous and hyper-mobility the most common. I have hyper-mobility type which used to be known as type 3.

Oct 19, 2016 2:00 PM

Ahh, I had a huge paragraph written and the app crashed! If I remember to I will try to repost when I get home and can type on the keyboard (it's easier on my hyper-mobile fingers)

Oct 19, 2016 5:53 PM

I have a dear friend in the UK who is a huge advocate for those with Ehlers-Danlos. I had never heard of it before he mentioned it.

Oct 19, 2016 9:08 PM

Darn brain fog and a Jeep that tried to leave us stranded! Sorry I forgot to log in on my computer when we finally made it home. Our Jeep decided it wasn't going to start for us while we were out and about today. We were half an hour away from home, we went into the store to get something and when we came out the Jeep wouldn't start. I called my brother and he came with a jack and jack stands and a tow strap. Anyway we got it started and made it home. I'm in bed now using my tablet, it's not much easier to type with than my phone. Darn hands keep losing feeling and then I have to put them down to get feeling back in them. Hopefully I can type tomorrow.

Oct 20, 2016 4:11 AM

@pusscat ya I spent some time today looking it up and I'm even a little confused it seems complicated. So I'm not sure what to look for because I couldn't find one clear good checklist of symptoms. It had a couple things that I was like ya that's familiar like the hyperextended stuff but I don't think I have elastic skin. And it was just really complex. But I'ma keep looking and bring it up friday.

@scaryann wow I didn't know it was so obscure in their studies. That would explain why I've never been told about it. but I see what you mean there are 7. And I'm so confused just looking at it all. I just want answers to certain things in my life like why do I get sick alot but they say I have a strong immune system and why do my legs bend back. Even if it's a non curable thing. Just so I can feel valid d have a community. Because I know there may not be ur cute for some things like eds or fibro but there are things that commonly help "x" disorder so it would be nice to be diagnosed so I can know why I'm look in for to improve my quality of life. If that makes sense. And it's orally ok. I'm so sorry the app crashed I know how that feels. Because I do mostly everything mobile because the phone is easier for e to handle than a computer but the keyboard is easier than the cell phone one so it's hard finding a balance. And I post a daily post on tumblr about my and have had the app crash and erase it all too so I now how you feel. I've even gotten into the habit of copying my paragraph or whatever before i post or send or sometimes just while into typing just in case. AND not worry too much about it if you don't have the spoons tomorow I totally understand. sorry bout your car. Even though you got it running it must've een hard being out longer and unexpected. I know it would've on me. So get some rest!

@mimikay that's super cool! I try to be better advocate for everything I'm paper diagnosed with. And ya eds is super not ell own because I accidently stumbled on it when it was googling stuff like legs bent backwards. or knee pops back. Then I found hyperextended knee and Google hyperextended knee syndrome and found eds. So I think it's super great your friend advocates for that!

Oct 20, 2016 4:15 AM

@paperheartz if you send me your email address I can send you some of the stuff I was sent - might help you. Even if you don't think it fits, it's still worth addressing with your dr. At the very least they can refer you on to get it properly confirmed/denied.

Oct 20, 2016 4:24 AM

Ok will do. And ya maybe even if it doesn't fit it might lead to something else my doctor might think it is if I fit x, x, and x symptoms. So I definitely want to give it a try! Thank you do much!!

Oct 20, 2016 4:32 AM

Happy to help

Oct 25, 2016 8:40 PM

I don't have the stretchy skin except for the area under my eyebrows yet above my eyelids. It really makes my eyes look droopy and they are always in shadow. Stretchy skin is found mostly, but not entirely, in the Classical form of EDS also known as types 1 & 2. Type three is hyper-mobile. This one is the most common. Type 4 is vascular, and is the most dangerous. Type 7 is the most rare and I forget what that one is called. I know it begins with Kin...

I have type 3. I was recently looking at some of my medical records from the geneticist and I scored 9/9 on the Bieghton score. But there are cases of people being diagnosed with type three without having any hyper-mobile joints, making it even more confusing and harder to diagnose.

Then you have all the other things that go with EDS, like the digestion problems, food allergies, environmental allergies, unexplainable injuries, and so much more.

I've dislocated my knee putting cinnamon rolls in the oven. I've dislocated my ankle walking down the hallway. I tore my rotator cuff by shutting the car door. I've even dislocated my shoulder by sleeping on it.

Oct 25, 2016 8:54 PM

I forgot to mention the MCAD (mast cell activation disorder) where you can have a reaction that acts like a severe allergy, but isn't one! Many people with MCAD have to carry epi pens at all times because litterly anything can set it off.

Oh yeah, chari malformation is another thing that is often found with EDS. This is where part of the brain sticks down into the spinal collum. My cousin and all of her sons each had to have the decompression surgery.

Pysdo-tumor crebra ?sp is also often diagnosed in those with EDS. I was lucky in that I only had one round with it. Many people have it recurring.

I didn't mean to take so long to reply, my hands have been beyond bad. I finally got some more wire to make my ring splints and now I have two per finger made. They help so much, it's unbelievable. I didn't even realise how much my fingers hurt until they didn't.

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