any poeple in north eastern u.s. with aps

[jetjetjet]

havent heard of any people in north eastern u.s. having any exprience with any form of aps [ hughes - sydrome ] in my area . would like to hear from anybody that may know some one that is in my part of the country thanks jet

[MaryF Administrator]

Hello there, this avenue might be a good one to start with, here goes.

americanaps.org/. I hope this proves helpful. M

[jetjetjet in reply to MaryF]

mary many thanks for the info will try site please dont be a strangerthanks yo all its been great first day of this for me bbn jet

[MaryF Administrator in reply to jetjetjet]

Good to hear that the the site is working for you, this networking and information sharing does help us all. M

[jessielou in reply to jetjetjet]

Hi jet

glad you posted on here.

Seems you not quite so alone after all. I know the US a lot bigger than little UK. But is amazing to know so many out there and having others to chat too. Is sad that we have to get so poorly and lose so much, before we get help!!!

Seems to me so many of us with this condition and our stories are so similar, some of the medical world got some catching up to do.

To use an old and much used expression 'Knowledge is power', certainly lots to learn from each other, wherever we are.

I hope you all feeling well today.

Take care, gentle hugs, Sheena (jessielou) xxxxx xx

[jessielou]

Hi jet

Mary's suggestion a great start like she says.

I hope you find someone.

Please stay around here and let us know how you getting on as well.

Take care hugs jessielou xxxx

[Christi]

I live in maine, US. Lots of good information on this site. Thanks - cs

[jessielou in reply to Christi]

Hi Christi

Welcome to the site, glad you found us, looking forward to hearing more from you.

Hope you feeling well today

Take care, gentle hugs, Sheena xxxxx

[jetjetjet in reply to Christi]

christi -where have you been , havnt heard to much from you , hope everything is well . looks like snow tonight 6-12 inches, thats crazy for 10/29/11. drop me a note when you have a second bfn jet

[Christi in reply to jetjetjet]

yes too early for snow! Husband likes it good for hunting. If you want you can email me: [e-mail] or you can find me on facebook: facebook.com/csaragosa7.

[jetjetjet in reply to Christi]

sent note on your e mail , will be hearing back from u soon jet

[jetjetjet]

hi christi well you are the first person ive found, i have primary aps inr been all over theplace last 2 years . having bad head aches last couple of weeks . referral to a rheumatologist , dont know this will take me . got a site from u.k. mary f e- mailed ,waiting to hear reply . american aps .org is e-mail have you used this site ? let me know thanks for reply jet n.h.

[jhberkley]

I'm in Vermont if that helps.

[jetjetjet in reply to jhberkley]

hi wow you are the 2 nd reply . i was beginning to think i was alone with this disorder , if you dont mind me asking ,what is your current status ,such as do you have any other complications along with the aps, i myself have primary as far as i know . being referred to a rheumathologist for the 1 st time in my 2 years with aps, have you dealt with any of these or other spealist that you could enlighten me on . certainly it would give me an idea what lies ahead please let me know thanks for reply jet

[lovemyheart in reply to jetjetjet]

i thought i was alone with this too. i had a stroke six years ago. i had a heart operation to close a hole in it. i have atherosclerosis and von willebrands which actually causes me to bleed so i am only on aspirin. plavix made me hemorrhage.

[jetjetjet in reply to lovemyheart]

hi lmh both the ather. and von w, are they both bleeding disorders if so , how does the aps effect , the aps being a cloting disorder. am i right in they manage your aps with just the asprin. also the ather. and von w. do these effect people of all ages there was one blog that i read a person had a hole in his heart he i think was in his 30 s jet

[lovemyheart in reply to jetjetjet]

You have von w. aps and atherosclerosis. Thats what i have and none of the drs. ive seen have ever seen this all in one person! im on an aspirin a day as i had a stroke 6 yrs ago. im afraid this may be too little. my INR was a 1 last time. Can u reply to me? i would love to find a dr in ny who can settle all this for me. i watch my diet and eat healthy and try to stay positive

[jetjetjet in reply to jhberkley]

hi j. berk this is great, getting more replys ,if you are reading these i assume you know my story . do you have any questions or info you would like to ad or talk about your experiences, getting lots of good imput we have camp in the north east kingdom in vermont , great up there .havent been able to get up there for last 2 years thanks for your reply jet

[jessielou in reply to jhberkley]

Hi jhberkley

Welcome to the site. Glad you found us. Look forward to hearing more from you

Hope you are well today

Take care gentle hugs Sheena xxxx

[jetjetjet in reply to jhberkley]

hi jn berkley you are another i havnt heard from in some time , how are you doing, hope alls well, this my day to contact people that i havent heard from. where in v.t. are you located . we have a camp in the north east kingdom, lemington to be exact. very niece up there although havent been up in about 2 years, about due wouldnt you say. bfn jet

[lovemyheart]

Hi im new here and i have aps also. I live in New York. would love to hear from you.

[jetjetjet in reply to lovemyheart]

hi lmh, hope things are well with you, how are things in n.y. . are you ready for the snow got your shovel all warmed up, they are talking 6-10 here, i guess it would depend where you are in n.y. drop me a note as to where you are located if you want jet

[jetjetjet]

hi lmh you have just started with this site, you have read the blogs so you know of my situation i guess ,so lets start with you telling me of you what you are dealing with ,for how long etc . a quick response will let me get right back . thanks jet.

[Lene]

Indiana.

[jetjetjet in reply to Lene]

lene got replys from maine , vermont ,new york , and now u in indiana would be interested in learning as much as i can from as mamy people as possible so get back .its good to know we have others like us. we all benefit from each others knowledge and experiences . will be waiting to hear of yours thanks for your reply jet

[jessielou in reply to Lene]

Hi Lene

Welcome to the site, glad you found us. Look forward to hearing more from you.

Hope you feeling well today.

Take care Gentle hugs Sheena xxx

[Lene in reply to jessielou]

Thank you, Have been a member for approximately a month now. My sis-in-law, Karen, is a Hueyand was just diagnosed this year. We love the support of the blog. I print these off for Karen every week and deliver them to her as she is hospitalized and has no internet access. She LOVES reading about others....she finds great comfort in knowing she is not alone and others suffer as she does. Just delivered a stack of blogs to her yesterday...she said, "It is amazing...these people have my symptoms...this is just amazing!" We are moving her to a nursing home later this week, she has been hospitalized since April and was diagnosed with "APS" in August. Please consider yourself "gently hugged" by Karen.

Lene'

[jessielou in reply to Lene]

Hi Lene, Hi Karen,

Lovely to meet you Karen, so to speak, I hope you are feeling a little better and hopefully will be more comfortable in the nursing home. You are definately not alone, lots of us hughies to share the ups and downs with.

Lene you are definately a very special sis-in-law :-), not many of us have such supportive family.

Thank you for the gentle hugs

Take care both of you, gentle hugs love Sheena (Jessielou) xxxxxxxxx

[MrBigDog]

I live in Kentucky...

[jessielou in reply to MrBigDog]

Hi MrBigDog

Welcome to thie site. Glad you found us. Look forward to hear more from you.

Hope you feeling well today

Take care, gentle hugs Sheena xx

[paddyandlin]

welcome to all the american contingent on the forum it is nice to see we are a international forum and will be able to share experiances no matter where we are in the world.

I was doing a bit of a clear out on an another forum and i came across this link i know they helpped some people in america but the way i look at it the more information and support you can have the better armed you are to face the doc etc Hope the link helps

americanaps.org/

paddy

Ps sorry just seen mary put this up at the begining brain fog must take more water with it

[Hidden]

Hello Jet and others.

I am from New Hampshire but now (for the moment) living in Atlanta. Wayyyy too hot down here for me....

Jet, where are you from?

[jetjetjet in reply to Hidden]

hi kristina been trying to reply to you ,but for some reason healthunlocked keeps ,i guess loseing my password or something. sorry .this is the 2 nd time this has happened . i live in south central n.h. so do you think the heat will drive you home. speaking of home .where in n.h. did you hang youre hat awaiting reply jet

[Hidden]

Hey Jet...

Not sure what it would take to get me back there but have been homesick

I grew up in Concord but lived in Laconia most recently. Are you in Manch? Nashua? Next time I am up there we should have a meetup!

There are some great docs in Boston but if I were you I would head to Waterbury, CT to see Dr. Greco. He is going to be opening a freestanding clinic just for APS!!

My email is [e-mail] feel free to email me off board.

[jetjetjet in reply to Hidden]

kristina the only symptoms i had was,shoting pains on left side of back,in er they werent sure what to think ,so doc came and spoke to me in length,i told him the only other thing was one week before i was sitting watching t.v. and had this tingling feeling on every part of my body from head to toe .exrays showed right lung a cluster of clots ,then they found right lung entire bottom one inch thick massive clot. next day found clots in left leg ,groin, neck,left arm pit. that was sept 31 2009.they told me it would be 1.5 to 2 years to rid my self of these clots , they were gone in 4 months .doctor mary started masive testing , feb 17 2010 a.p.s. .if it wasnt for dr. lynch [er' ] and dr. marys persistence i probably would of been dia. with m.s. .dr mary and i developed a great friendship ,but she became ill and moved away , this realy scarded me because alot of other doc.just dont have the drive she had.i dont think i will ever find another like her . thank god i still have her two nurses as they have my respect and trust they ar simply great . well my one typing finger is exhausted jet

[LisaWA]

Hi, I am the other side...Seattle, Washington region... If you want to talk let me know...

LisaWa

[jetjetjet in reply to LisaWA]

hi lisa i tryed to respone to you just a little while a go im not sure that my replys are getting thru do me a favor and get right back , i will leave the comp. right where it is thanks jet

[Texasgal]

Jet

I was just diagnosed with APS. I miscarried at 15 weeks and so my doctor checked me and sure enough this is what I have. My question is I have been having tingling feelings all over for 2 weeks and my doctors keep blowing me off. I get dizziness,miganes,fatigue and ringing in my ears. They told me they won't start treatment until I am pregnant again. I am just curious what other symptoms anyone may have had. I live in Nevada

[jetjetjet in reply to Texasgal]

hi t gal, how have you been, havent hear from you, if you dont mind me asking how old a woman are you, was this your 1 st pregancy. also are you still having the tingling etc . get back when you have moment jet

[jetjetjet]

hi texas g-- when i had tingling over entire body. er . docs. found clots in both lungs, left leg ,groin ,left arm pit , neck. also had shootting pains on left side of back.er .doc said clots caused tingling and pain in back. were you tested for clots ? tests such as c.t. scan m.r.i. m.r.a. , ultra sounds . these are tests they still run on me . let me know i curious and concerned if they havnt . jet

[jessielou]

Hi Texasgal

As jet says hon this needs checking keep pushing with docs, print info out for them. americanaps.org and Hughes Syndrome Foundation.

Lots of us have same or similar symptoms.

I seriously question whether Hughes is just active in pregnancy, there may be some but I doubt there are many.

Take care gentle hugs Sheena xxxxxxx

[lovemyheart]

Hi Jet. How did you do with the snow. Here on Long island we received a lot of sleet and hail. I think Jersey got it the worst. Its funny how u mentioned someone having a hole in their heart. I had mine closed in 2005 with a CardioSeal. it worked out quite well thank God, and I now have less migraines as well. Hope u r feeling well. Take care.

[jetjetjet in reply to lovemyheart]

hi-love sorry its been so long that i have dropped you a note,today is turkey day , we got that snow last nite , very heavey and wet. how did you guys in n.y. make out with this mess. dont know if you follow blogs and such , things are really starting to get interesting. rheumy ran 26 blood tests on nov 2 nd took a while for results- got to talk to him yesterday. besides a.p.s. he found 3 more blood disorders, some may be hereditary. he also said he has never seen this before . he went on to say no wonder my inrs are all over the place. he cant understand how i am feeling as good as i am. he wants inrs checked every 3 days, also wants to put me in clinic, dont know where yet , will tyr to let you guys know when i can bfn jet