got some interesting news: i have in... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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got some interesting news


i have in the past sent info to the differnet.places, well !!!!! duke unn. at chapel hill n. carolina got back to me , they are sending people to me here in n.h. to get some of my blood, i am i guess i am in the top 3 as far as my blood being very unique. they are interested in me going down there . i gave the doc my results over the on line system , he got right back, said he would put me in touch with the head of that dept she had a problem , getting to me . i finally got back to her, very good listener. they want to to do a family history as , other than the a.p.s. the 3 other blood disorders i have are hereditary, so i guess my brothers and sisters are also going to be tested, first they want the results of the avn tests being done friday the 9 th, i have it but they dont know to what the extent the damage is. i also asked did they get info from people other than in the states, she said they do but not to much from other countries, i asked if she would like me to put this info out to you guys ? as this a world problem ? so any one interested in talking to them let me know ? the more we can feed them trying to look for a cure, and answers there shoud be no boundaries, let me see just where this goes . i have e- mail site an phone # s, you people will want site info. they have a forum going on in a couple of months in texas i think that is largely going to address aps. maybe doc hughes knows of this? im very excited about all this, need some feed back my friends please jet

11 Replies

Duke University has been working on this study for a couple years now. Here is the link to more information.


Yes they can ask me - all for constructive research! Mary F x

jetjetjet in reply to MaryF

mary how are you, hope things going in a positive direction , miss the humor and wit. how have your appts. been going ? let me know------- jet

mary i guess that naughty kristina has the site for you, that saves me trying to find it again, as the naughty one says, my computer skills are not the best , give it a try and see what happens thanks let me know as i will be talking to her this morning, at duke jet [ one of santas little helpers ]

Hi jetjetjet the doctors in London UK did a blood test for me 2 years ago and apart Hughes syndrome, Sjogren’s syndrome, Polyglucosan myopathy pseudo obstruction – in association with gastrointestinal neuromuscular disorder of the gut, they found Glycogen Storage disease in the intestine which they told me I'm one of 5 people in the world who has it, and recently Osteoarthritis.

Do you have any of these diseases as to me what you are saying your blood is unique I would like to know what they found, as it might be of help to me. Thanks

dalalf hi a.p.s. original d.i.a., this was it for 2.5 years, rheumy found 3 other blood disorders protien s and c were so low practical nonexsisting, cardiolipin igg and igm extremley high , l. a. was also added in the mix , then last week a.v.n.[avascular necrosis ] x-rays showed me positive i go to dartmouth- hitchcook in up state n.h. tomorrow nite for and exstensive m.r.i. 80 min in machine to determine the severity of damage to hips ,knees, and feet - doc thinks its stage 1 but this should tell for sure. they have run 28 blood tests since nov 2 till now, and also one urine test, some of the other results they are looking at ,but right now i cant tell you as im not sure. but as i learn more then they will come to lite and i will understand more, hope this helps , let me know jet

Well done !!! lets see what the results say.

dalalf i was also dia. with osteoarthritis in the problem areas , but we are at the avn in hips down. still have problems with hands , fingers so i not sure where we are going yet got to go to nuring home to feed mom and dad ill be back in about 4 hours ill check comp then bfn jet

well todays the day, a few changes i guess to plan , instead of doing ,left side ,than right , because i think ,of an old accident, i made mention of they decided to do hips and pelvic area in its entirety, now i wil be in machine 100 min.. they cant give me anything to relax me because of my app. time. and as hyper as i am this could prove to be interesting. i guess the old 3 stooges method, i rap in the head with a hammer, wont be home till 9:30 or 10:00 our time off we go jet

Hi Jet,

Hope you were OK whilst doing all tese tests etc, I'd talk to them if I know it might be of help in any way of helping others or to go towards a cure, obviously, who wouldn't?!

Let us know more as you do.

hope you got home safe.


suez i should have my paper work this coming week, sharon asked that if i dont get it by thursday to call her immediatly she wants to set up her people to come up from n carolina to get my blood drawn, also im sure the legal paper work will be there to release all records from all docs . this dr ortel is a hemotologist, there specialist' i will also be talking to her on monday. kristina put a site out there. ill ask her if this is the one to her as you could e-mail instead of land line keep me inyour thoughts as you are in mine ----- jet

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