Sticky Blood-Hughes Syndrome Support
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Back to the machines

After a couple of not so good instances . a few of my Doc's have decided it's time for a MRA that may or may not lead to a MRI and this will be tonight at 6:30 pm should be in there about 45 min. to an hour . Brain and neck and chest i believe will be the area's in question then Doc's will decide then if i will do the MRI or not . Then next month 4-4-18 I do ultrasounds and then back to the powers to be to see just where we go from there . Got to love that huge machine with the mirrored plates around your head { for part of the process , that is what i remember from the last time years ago } BUT i get to listen to that great music and i think they let you bring in your own. but theirs is just fine with me.just no rap !! I find doing these procedures after regular hours is always better and faster for me as the hospital has an ER there so they have to keep these places staffed so i don't mind {no pun intended Ha } i have been in there at 10:30 on a sunday night once so 6:30 isn't bad -good way to cap off the day .

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Hi Jim

Not sure why they wouldn't do the MRI and MRA all in one go - they did with me! While your in the machine its daft not to take the images at the time rather than make you come back and do it all over again - cost effective too I would have thought.

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Best of luck with that, let us know how you get on! Make sure Casey does not jump in there with you! MaryF

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Best wishes Jet, keep us posted, no pun intended. Hah!

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Good luck with your tests.

I also had them both at the same time. mri and then at the end they injected me with something and did the MRA last.

Hope you get some answers

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Good Luck Jim!

Like Mary I am also worried if Casey will join you in there.

Ask them why not do both at the same time as Lynn says.

Lof of hugs from me

Kerstin

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Getting ready to go - i think because there is 3 Doctors involved .Who knows by the time i get there they may - it is 5:25 here now-and the hospital is closed -i choose to sign up to go in after hours - but because of the ER they are staffed so they only ordered this a few days ago . I thinking Micro -clotting BUT i have to let them do what they want as we all know anything with us can be a major undertaking to get things done.The micro would explain 90 % of the problems The month and left cheek numbness - and left arm Tingling so much more than normal - the bad leg pains - my therapist is on board with me on this and she may ask for a EMG after this is all done - i won't know what she will really do tilafter this is all done next week ,i still have the ultra's to go . saw my orthotic Doc today so got those ordered - it has been 3 weeks since i started trying to get those as my feet get so bad i can't walk on them -and with the left leg pain made it just crazy . Don't know when i will get the results- maybe next Monday as i have an appointment with my PCP for my stomach and he is involved with everything else so that appointment may end up being everything BUT the stomach. That's OK with me They are looking along the lines of TIA'S - i already have enough white matter in the brain as it is now . Guess i am falling apart there guys. i will let you know what i can i don't expect to be back home till at least 8:30

Thanks for all the support. well off i go !!

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Well Guys got all the way there and when i got there -the MRA had been not coded at all so they couldn't do it. So i am back home with nothing done at all. So tomorrow when the info from The Imaging place gets back to the hospital i guess we will get re-scheduled.That's why they call me 'Mr Murphy " murphy law - what can go wrong will go wrong and it always happens to me HA - Like in Dec when i had the clots in my left leg and the ER doc. ordered a CT scan stat and it took a week exactly to get it done ..It's a wonder i am still alive , 0 well all i guess i will go to bed Good Nite all !! C & J

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Ohhh Pooh! Isn’t that frustrating! Hopefully they will get you in quickly as you were there and ready. Goodnight, sleep tight😴😴😴

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Morning Glory -- how are you this morning -- i have been up since 4 A.M.- had my 5 hours sleep all re-charged for today's festivities- i expect calls shortly after 8 AM .when Doc's offices get the info of the huge blunder last night - so you are going to stop in for coffee with Casey and I -- got to get away from this comp and get him his breakfast in case i get called right backup tere - these need to be done before next weeks ultra's .got to get into the RAIN ROOM and get cleansed and smell PRETTY Ha . don't forget to knock hard on door when you arrive -- boy wouldn't be great to get you and Gina and all our EAST COAST family members at the table for coffee or something even stronger !!! {WHO SAID THAT - boy wouldn't my Doc's love to hear that !!!! LOL

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That would be enlightening and it would be fun I agree. Yah go get that “stinky” off yourself! Good luck today I hope all goes well and findings bring some answers. Hugs, Cindy

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Yes thanks for the hit of the stink off and i told the tech's that i had just taken a shower last week so everything should be good !! they just laugh- i won't know much now till monday

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Oh! that is just crazy. Tell us more but now it is Easter so it will take some days I suppose. Wonder who is in charge there.

Try to have a HAPPY EASTER all the same Jim!

Kerstin

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I'm ok my friend - this is nothing new to me as i average about 25 appointments a month i do blood at least 2 times a week and always seeing one of my many Doc's some i see once a year -some every 3 months -some 2 times a year-i go to pain care twice a month -dental {2 different places } every 3 months and i could go on gastro 3 times a year and ALL of this changes {as it is now } if problems out of my normal mess happens. They are going to bring my Hemo back into the middle of this and she knows there is nothing out there safe for me as all my problems make it difficult to find anything as strong as Warfarin sul.even though i have to be stabbed twice a week it has saved me on a couple of bad problems and i like keeping a close eye on it .They don't adjust my my amount of Jantoven every time i test - it is make sure i am staying in therapeutic range Ha those of you that know me know i am always all over the place -- this Sept first will be my 9 year anniversary and to still be alive is a feat in itself. OOPS sorry for the rambling . will let you know what happens next Thanks to all

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Not to make excuses for them -But the Hospital went thru a major overhaul of their entire computer system so that all their branch satellite offices can see the same information -this was done in Dec. and the Doc's obviously are still having trouble with this. although this sis their second major mistake {that's why they call me MR MURPHY }.I am still doing my paperwork for my benefits so i will be here this morning and with a little more luck { ha ha } they will call and get this done- it has been about a week and a half since my last episode of the numb mouth and left arm strong tingling . I need to sit down and look into more info on Micro clotting that i can take to them as i suspect tat it could be a big part of a lot of my problems at this point anyways and i would have to bring something to the table . Anyone want to come over for coffee, Casey and i will be home. !! :-)

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Goodness gracious! Your patience is an example for all of us! If there was not that issue of hundreds of mile seperation I would love to come over for a cup of coffee — and finally meet Casey. Good luck. I’m off to purchase strawverries from The Strawberry Lady (she has a Facebook page) and deliver them to folks. But if you want to chat thsi afternoon — or whenever — feel free to ring me up.

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Thanks my friend - wish we could have a it down - that would be SUPERFABULOUS !! Happy Easter to you and all of our world wide extended family . wouldn't it be about 800 miles ?? i'll have to check that !! Hugs my friend and will keep you in the LOOP sort to speak :-)

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I also want to come ........ how many miles is there to Stockholm????

I would like to see Casey and you and also Gina very much.

I was a bit unlucky today. The snow and ice has just disappeared on the pavements and when I had seen my daughter Karin and her husband today, I happened to fall on something. I distroyed a pair of jeans (but most young people here have their jeans torn on a lot of places) but I do not like that style so I will have to throw them away.

I went back to Karin to get my big wound taken care of. Nothing broken and that is what we are thankful for at the age over 70.

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Be careful dear lady. I think the ripped jeans would probably be very much a fashion statement for someone of your maturity... unless of course it was ripped over your Bum,, then perhaps not so much..ha hah. Stay well, glad you didn’t hit your head!

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Glad you are ok my friend we must be careful on ice!! maybe thousands of miles we could get everyone here for coffee but my apartment is small so it wil be a tight fit but as long as we all shower it should be ok !!! would love to have you here Kerstin

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But there was no ice........... it is near spring here. It was the gravel, (right word?) that is left after the ice is gone, that ruined my jeans. I do not know why I fell like that. A mystery it is. I will not blame APS for it though.

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Kerstin, is your 3-D ( three dimensional- depth perception) ok after the cataract surgeries? All back to normal now?

A little scary you fell like that- just always make sure you keep your head from hitting any thing...

I don’t like that at all.

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I am also very surprised I fell like that but there must have been something I stumbled on. I always look down on my daily walks.

I think my vision is ok now after the two operations have not thought of 3-D vision. Thanks for your thoughts!

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WELL gravel or sand can also be slippery - the main thing is you are OK and the jeans well it is fashionable now . !! mine have holes and i don't care - i really could care less of how i look { to a point ? LOL }. You should see some of the LOOKS i get from my friend maureen !! collar crooked - untucked GGG it's like my mom all over again -do you remember moms saying " make sure you have clean underwear on -you never know when you could end up in the hospital " !!! Did anyone else's moms tell them that .

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Cozy coffee time at Jim’s with the gang - let’s go!

So what now? What became of your tests? I still think ( and my gastroenterologist would likely tell you the same if all gastro studies come out ok) if you are going into paralytic ileus that you are micro clotting to tiny vessels that supply the nerves that control parastalic contractions of bowels.

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WELL guys nothing yet on my tests - first must of been ok because i hadn't heard anything yet and 2 appointments today- last being PCP for results - did see him monday but no talk of first one they didn't have it resulted and wwe had other things to go with. so today is it late afternoon with him . will let you know .

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Good luck

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Thanks Witty

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tests MRA came thru unremarkable and a same answer with the Dop Ultra - had some shady images but were good enough i guess - i know the tech had a difficult time as i had to keep repositioning to get a god angel on the neck . so now going with kelly's micro clotting - I will have her give me the names of the tests that were done - i think they were a mile long Ha Ha But my PCP is going to call my Hemo and get her out look and opinion and see if she thinks a EMG is the way to go because after the conclusion of stretches today with my therapist Kim -that what she is recommending. so from here // KELLY are you listening ???LOL PM me please . well that is all i got for now accept pain lol

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Ooops... just noticed you wanted that PM’d.

I’ll look there , too!

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Sorry! Was in Austin all day. Guess who has a fab new Hematologist ?

Me me me me me!!!!!!!!! That right, this Texas gal right here! This one!!!!!

😎👍🏻

“ Run that INR between 3.8-4.2- if that’s what you are consistently proving out to feel your best- add the jr aspirin . For a repeat arterial thrombosis we may add a second antiplatelt in addition to warfarin. ( I shouldn’t think I will need that.)

He talks about “ only borrowing as much risk as you need to at one time.”

He is aware folks can clot at 3.8-4.0.

Couldn’t agree more.

Coumadin for reclotting and arterial involvent is the only known and trialed way to keep your particular case type safe- that’s correct, fine sir! So glad you are up on your studies! Hallelujah!

Thank you and shout out to Amilynn on this fine forum. I’ll thank here personally and on ordgional thread where I asked for help. Other Texans responded also and I have that if I need it. My GP has all listed- thanks I may need the Dallas specialist also. ( genetics investigation. ) , although he runs a lot of genetics.

Ok, I guess you just think this post of yours is all about YOU... sigh... 🙄

Fine...

“Ok. Enough about me talking about me... So what do YOU think about me?!?! 😂😂😂😂”

Ah, goodness. best line ever!

Ok. Ok!!!!

Tests. Your results. As I thought. ( because most of us have been down this road when it comes to the gastro business...) all clear.

It started out with a suspicion of “ motility dysfunction “ at age 27/28. So I ate the egg sandwich with the tracer. ( for gastric emptying studies.) But I was well during the test! I would always feel unwell in the night...

my suspicion was they would show ok unless I was actively ill. My suspicion was correct, although the doctor assured me this was not the case. It would still show a problem. Of course the test showed all was fine.

All the time loosing so much weight. I am 5’3 1/2” and was down to 96 pounds. I like to be 110.

I would be fine for a week or two or three, then sick again.

Age 29, ( 1998/1999?) gall bladder fail The day Columbine High school shooting happened - I was recovering out of surgery and my hubby had on news to shooting that had just happened and the wall paper in room appeared to be waving , so I thought I was hallucinating the news as well.) - gall bladder failure. No stones- lowejection fraction. Scott and White hospital Temple Texas . (Teaching Hospital.)

After surgery-still in hospital much worse! Kept in hospital because common bile duct was getting infected. IV antibiotics. Kept about a week. Horrible ileus. Little did we know...

All this just continued.

Basically what you would need to do is go in while you are sick and get an X-ray and exam.

X-ray will show you are in ileus by bowel loops having a line of separation. Liquid on bottom and air on top. Bowel sounds will be high pitched and sing song- abdomen very very tight and for me a bit distinded.

I will follow an episode will diarrhea with mucus.

Sometimes during episode vomiting but usually not.

A study of this lovely sample will show high leukocytes that will not culture any specific bacteria.

I ran fevers- not high and now we know had right temporal lobe partial complex seizures.

I had “ muscle cramps” now I know clots...

The only thing that made me feel better was a hot ( hot ) bath.

This did lead to appendicitis in 2011

Diagnosed with seizures 2012

Diagnosed with APS November 2016

( multiple miscarriages, ectopic miscarriage, ITP age 18 months of age, loosing vision - micro clots to optic Berne’s and retinal nerves) DVT’s to arms, superficial phlebitis with clots ,

Current age-I was 49 last month.

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Congraaat u lations...bout time, yee ha!

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Darren Kocs

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what is gong on with me is the cramping in abdomen, but the muscles are's in legs , feet horribly painful , but my orthotics are shot , no cushion left at all so that might explain away some of that pain -- what i brought to Mark and Shannon { mark my resident Dr. and Shannon my supervising Nurse that has been with me the longest 6 years} there now !! i am Telling them both that this mico clotting could very well be the culprit with a great portion of this other pain . although i am o some strong pain killers and muscle relaxers it is bad just about everyday now and i do have a high tolerance for pain but this old body is getting tired and just worn out - i am hyper so that has also taken it's toll . So kelly and crew i could use some solid info

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I can have “ all over clotting” when I go into gut clotting. I can have smaller clotting in superficials in arms and legs at the same( migratory thrombotic phlebitis with documented clots in Doppler sonogram of superficials- ) time as ileus and increased seizures concurrently.

It’s almost like my body is trying its damndest to go into caps. ( which is often at the micro clotting level.)

This is of course theory- but only to a certain degree. The larger veins we see the clots. The EEG’s we see the seizures.

Note: we are not running EEG’s concurrently while I’m actively sick. This was in 2012 prior to aps diagnosis. I just know the signs of break through partial complex temporal lobe seizures. I’m on 300 mg topomax and I can still have a few break through ( never grand mal) seizures.

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wow whats the new Hemo's name BUT great news my friend -

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Darren Kocs- and I replied to your pm

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can't find it - wil have to work at it later today --Thanks K

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Check for March fractures in feet? Avascular necrosis - poor blood flow (within/to?) bones. This is quite common in feet, hips, and jaw bones.

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I have AVN - right hip core decompression done 2012 and it is going bilateral - i have had many blood flow tests don on feet - i think it's the nervous system for gut and legs and most likely part of feet - i have orthotics made {which i am over due for -old ones here ar shot all packed down, been 3 weeks straightening out the script for them -medicare is causing all kinds of trouble there . I had mold done last week and they should be in on the 16 th - non to soon feet get so painful and if i have to be out for appointments and such they some times swell and once my hiking boots are off -they are off for the rest of the day - they won't go back into boot to swollen and tender . i got to go now to 2 appointments and pick up some meds - feet ok so far -i can only hope they stay that way !!

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