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

  • 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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