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Thread: fainted apparently...

  1. #21
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    Quote Originally Posted by mg12061 View Post
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    Wow that is great to hear! I'm sure it was a little stressful being in that position but so glad it was positive. You mention the "flushing" in your feet. Do you mind explain? And why you want the veins checked... Kathleen has very poor circulation in her left side. Especially her foot. It gets vey discolored at times. The surrounding temperature affects her foot and hand also.

    So glad your mind has been put at ease!
    Mary Grace
    Thanks so much Mary Grace! Yes I was a little scared and praying I would not faint a second time as I was sure if I fainted again my doc would make me wear the heart monitor. About the flushing: When I fainted originally my legs had turned a bright red and the skin kind of itched. The first cardiologist said this was just the blood pooling down as a result of heat. I have been exposed to heat where my legs would get a bright pinkish color and the same can happen after I bike ride from exercise but they never turned full red before. I called a 2nd doc after getting annoyed at the first doc's manner, and the new doc suggested a ultrasound on my arteries/veins to see if they are swollen or if they open to fast because they are out of whack. I have not been able to get an appointment for this yet but it makes a ton more sense than the heart monitor especially since I had no other reaction this time. My docs tell me I have excellent blood flow to my limbs(so far) and that spasticity can actually help increase good blood flow to the legs as spasticity causes the muscles to ask for more blood to remain tight. My knowledge of stroke is limited to the stroke research for my film here http://cripvideoproductions.com/astrokeofendurance.php but I believe the discoloration you see in Kathleen is purely stroke related. I read people with sensory damage from stroke will have coldness and bad color at times on the effected side because the brain no longer communicates properly with these areas. My teacher friend with the stroke sometimes had paleness. Some people with CP also have a problem where the feet look bluish depending on the type of CP. My docs were more concerned about blood flow from my heart to my brain since CP is basically a stroke and passing out is also lack of blood flow to the brain, but since I flush I want to have the arteries checked in addition to that. If her foot is discolored on a regular basis please follow up on this with the person who makes the AFOs. Bad fitting AFOs can mess with blood flow. Also never allow the straps on the AFO to be overly tight! That can definitely cut off the blood flow and that's very bad for her.
    Last edited by funnylegs4; 04-10-2018 at 09:15 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  2. #22
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    funny legs, Thanks! Her foot gets blue/purple quite often always has since her strokes. It gets cold too. I've always been told it's from her strokes and it's the blood pooling there. Even still I always keep an eye on it and make sure I can get the color back into it. I try to be careful and keep a good balance of tight but not too tight on her AFO but it's always a good reminder for me to be extra careful thank you! Keep us posted if you get the veins scanned. Kathleen had her veins checked once not too long after her strokes. Her foot got really blue and I couldn't seem to get the color back, her pediatrician sent us to the ER. They checked her circulation and of course the color was coming back by then. They diagnosed her with raynoids. I'm not so sure this is an accurate diagnosis. She doesn't get that "white" coloring and it's really just her left side so seems more stroke related.
    Mary Grace

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  4. #23
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    ((((((funnylegs4)))))) ~

    I'm glad that you had that experience to verify for you that it was likely a virus. I pray that you continue to be healthy with no further episodes.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  6. #24
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    Quote Originally Posted by mg12061 View Post
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    funny legs, Thanks! Her foot gets blue/purple quite often always has since her strokes. It gets cold too. I've always been told it's from her strokes and it's the blood pooling there. Even still I always keep an eye on it and make sure I can get the color back into it. I try to be careful and keep a good balance of tight but not too tight on her AFO but it's always a good reminder for me to be extra careful thank you! Keep us posted if you get the veins scanned. Kathleen had her veins checked once not too long after her strokes. Her foot got really blue and I couldn't seem to get the color back, her pediatrician sent us to the ER. They checked her circulation and of course the color was coming back by then. They diagnosed her with raynoids. I'm not so sure this is an accurate diagnosis. She doesn't get that "white" coloring and it's really just her left side so seems more stroke related.
    Mary Grace
    Mary Grace,you're very welcome! what was the artery/vein check like for Kathleen? What was the process?

    Thanks Rose!

    btw Here's something interesting I learned while giving a presentation the other day. Adults with CP do have a general higher risk for heart disease than able bodied. CP can also rarely be caused by a heart defect. That might be why the cardiologist was a little over cautious and wanting the heart monitor :( That being said the higher risk seems to be the usual risk factors and being a chair user who is over weight. I am not overweight and I am able to walk, plus no risk factors, so monitor still seems really unnecessary. At least now I know what the doc was thinking though. My bad for losing patience with the doc. :( I really don't want heart disease and if I find out my murmer is why I have CP that is going to freak me out on so many levels. bleh.
    Last edited by funnylegs4; 04-14-2018 at 07:57 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  7. #25
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    ((((((funnylegs4)))))) ~

    Are you still planning to have the ultrasound? It might be helpful, even if it's just a baseline for the future. At least any ultrasound might rule out an heart issues.

    I think that I mentioned that I was diagnosed with a heart murmur, probably about 50 years ago. I think heart murmur is a rather common condition among the general population. So, perhaps you can try not to worry too much about it. It's possible that you've had it all of your life, or a good part of your life, and maybe it was undetected until now.

    I would rather the cardiologist be extra cautious than dismissing potential problems, which could be associated with CP. I would rather know than wonder. If you know you have a medical issue, then you can treat it.

    You are in my prayers, and I am sending you lots of healing, positive energy, dear friend. Be good to yourself, and RELAX.

    Love & Light



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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