smileyface
Registered: 05/16/09
Posts: 45
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Reply with quote | #16 |
Hi,
So I realize this is an old thread...but I think I remember Drew's sister? (or some other familial relation) having POTS? Have either been evaluated for Joint Hypermobility Syndrome (JHS), sometimes called Ehlers Danlos Syndrome (EDS), Hypermobility Type?
I have EDS (about 70% of people with EDS are predisposed to having POTS), and I have a lot of joint pain, etc...
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drewswife
Registered: 05/11/08
Posts: 90
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Reply with quote | #17 |
Hey there! I know I've been pretty quiet lately, and I'm sorry for not contributing enough to this community. Things have just not changed for us in the slightest--Drew's still in the hospital every 2-3 weeks for 10-14 days at a time, and it's really begun to overwhelm me again. I have to echo one of the other posts: sometimes it's just too frustrating to talk about. Still, thanks to Robin checking in on me, I'm trying to be more involved. Anyway, all that's to say HELLO to everyone again 
Smiley, I haven't heard of either of these syndromes, but I'm certainly interested in learning more. Drew's having so many aches and discomforts these days that it's hard to know what's what. I'm sure that some of them are related to being in bed so much, but the other factors are certainly a mystery. Drew's sister, who has POTS, hasn't ever mentioned being tested either, but she doesn't experience significant joint pain.
I'd like to hear more; I hope you're doing well!
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smileyface
Registered: 05/16/09
Posts: 45
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Reply with quote | #18 |
Hi! I think I've asked this to you before, but have you been able to get home care at all? When my CVS was really bad, I was able to go on home care, and then I didn't have to go to the hospital anymore. They give you little backpacks with the IV pump in it. I was able to give my own medications intravenously right when episodes started, so I was able to abort them much more succesfully and through trial and error was better able to figure out what works.
Sorry to hear things still aren't better. Sending healthy vibes your way.
Ehlers Danlos Syndrome, Hypermobility Type (the kind associated with POTS...the other kinds aren't applicable...some people read about other kinds of EDS and get scared...important to remember that it's the hypermobility type)...is a disorder in which there is a defect in your collagen. This causes the joints to be "loose". The test for hypermobility type is one point for each manuever the patient can do
1) touch thumb to wrist, one point for each hand
2) hyperextend the elbows more than 10 degrees, one point for each arm
3) hyperextend the knees more than 10 degrees, one point for each arm
4) bend the pinky finger back more than 10 degrees, one point for each hand
5) touch the ground with palms flat
That makes a total of 9 points. A score of 5 or more is positive for EDS, Hypermobility Type. A geneticist should be able to make the diagnosis. In addition to joint pain, POTS, and many other things, EDS is associated with a lot of stomach issues such as gastroparesis (delayed stomach emptying), and severe reflux.
Relatively I'm doing pretty awesome, thanks!
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drewswife
Registered: 05/11/08
Posts: 90
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Reply with quote | #19 |
Hey, Smiley. I've thought about the home care option a lot, but we still haven't tried it. The thing that always holds me back is the med dosage; I don't know if they would allow me to administer high dosages of medicines at home. I guess it's worth asking, though, and I'm encouraged to hear that it was so helpful for you. Do you know if others have been able to administer the meds they typically get in the hospital at home?
I asked Drew about each of the 5 tests, and he definitely can't do any of them. He's never been very flexible. I really appreciate you thinking of him, though, and trying to help us figure out his joint pain. We appreciate all the insight and suggestions we can get!
That's wonderful to hear that you're doing relatively awesome!! People like you give us hope.
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smileyface
Registered: 05/16/09
Posts: 45
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Reply with quote | #20 |
Hi! I was able to get the same dosages through home care that I was able to get home. But only as long as I had tried them in the hospital first, and not had a bad reaction like an oxygen desaturation.
How's Drew doing now? Out of the hospital?
I'm unfortunately in the hospital  , but hopefully will be out soon.
It's been almost 5 months since my last visit though which is exciting. But they're having trouble with me these past two weeks, so I might get a port and do home care, so I can continue to go to school. I love home care, it really makes things easier to manage. So worth trying...although it can be a little hard to set up at first.
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seraphim_amon
Registered: 06/12/08
Posts: 60
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Reply with quote | #21 |
Just this week my doctor after running about 50 blood tests had me do what is called an IV Iron Dextrane infusion. My liver was swollen and only functioning at 12% from all the vomiting. I had to sit with this IV in my arm for over 8 hrs, but, I got some of my energy back, and some color back in my skin, However this will be something I have to do once or twice a month for the rest of my life. My CVS always depletes (for some reason) the Iron stored in my body........I did get a lil sick after but not as bad. It is not a cure all I still have CVS, this helps however keep iron levels stable. And allows me to have a bit more energy and helps me absorb the medications better.
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There is much suffering in the world - physical, material, mental. The suffering of some can be blamed on the greed of others. The material and physical suffering is suffering from hunger, from homelessness, from all kinds of diseases. But the greatest suffering is being lonely, feeling unloved, having no one. I have come more and more to realize that it is being unwanted that is the worst disease that any human being can ever experience.”
~ Mother Theresa
20th century humanitarian |
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