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Hughes Syndrome APS Forum

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Sorry for the absence

jetjetjet profile image
8 Replies

WELL I GUESS I CAN BEGIN WITH BLOOD BEEN EXTREMELY BAD -- TESTING EVERY 3 DAYS AGAIN JUST COMPLETELY OUT OF CONTROL.5.0 ONE DAY 1.3 3 DAYS LATER. BACK ON ENOX 40 MLS PER DAY -- SAFE FOR LOW INR BUT CAUSING MY FOOT ULCER THAT IS TRYING TO HEAL TO SPLIT WIDE OPEN AGAIN -- LOSING THAT BATTLE .

Nash - Fatty liver status---- lets see 16.7 on fibro scan ultra sound done 1/2/15 -- asked about Doppler ultra to be done to see if clots present in portal vein-- most importantly is all they are seeing IN liver is Fat or clots ?? Dc. that i had been working with for last 3 years did fibro scan and we were talking of Doppler left . got another Dc . started to get her up to speed she left. now new Dc is head of Gastro . unit , wrote him of what and why i want Doppler and he is confused. so that isn't going any where- can't take any meds for liver so exercising is all i have to combat fatty liver but foot is stopping that right now.

Migraines are starting again after 4 years- MRI for that Monday 4 /13 15 -and start therapy for them ??

Insurance took away my Narcotic cream for back and legs in Feb. and now back shots at risk i believe , i was getting them every 3 weeks for severe muscle spasms-- was suppose to get them 4/ 10/15 but was informed that appointment had been changed --to what i don't know --only hope for the better .. maybe a new and better approach and not that have have been dropped also as this would be devastating to being able to function at all.

Good news i haven't gotten any taller :-)

Thanks Casey & I

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jetjetjet
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8 Replies
MaryF profile image
MaryFAdministrator

Hi there, sorry things are so tough for you please get better as soon as possible, sorry to hear about your foot on top of everything else... MaryF

MaryF profile image
MaryFAdministrator

I also hope that Casey is in very good spirits..... youtube.com/watch?v=6TYtxER...

MaryF

jetjetjet profile image
jetjetjet in reply to MaryF

Thanks " M " and " L " -- been going thru a lot here .

all this at once is over whelming at times -- really need to get this liver deal going in the right direction -- trying to do more research on any and all options i can come up with .

first and fro most is the fibro scan and getting the Doppler Ultra sound done to see just what is fat and what could be clots in the liver . any thing you two guys can come up with let me know . time is running out on me here .

we have been together almost 5 years now i think and you are both very knowledgeable . so anything you even experimental i am willing to try . my options right now are slim i think.

i need something to bring to the table sort of speaking . but the Doppler should be first . what do you think on that ??

Thanks again Casey and I :-)

MaryF profile image
MaryFAdministrator in reply to jetjetjet

I presume you are getting them to look at your Thyroid beyond the useless TSH test, as an untreated thyroid can raise cholesterol and also some with thyroid especially under medicated do report fatty liver. Also gluten free? and all the additional things of making sure D, B and Iron are all at the correct levels, these are just ideas. MaryF

jetjetjet profile image
jetjetjet in reply to MaryF

Mary i brought to one of my dc's about your question to me about the thyroid and what test was used -- BINGO

The tsh test is useless for us especially me with all my blood problems -- i will be seeing a Dc. on Monday -- new foot treatment may be causing a reaction i am having since they started it @ 10:30 on last Wednesday.

I asked one of my special nurses about the thyroid as you suggested .

NOW was it a T- 3 and T -4 i need and is there any info on it i can take to them .

i told my nurse where this info came from and she knows i speak to lost of other APS people from around the world and that is some very knowledgeable people here and there is where the questions and concern about these tests come from .

I will bring what ever i can come up with Monday morning Appt.

Thanks my friend

Casey & i

GinaD profile image
GinaD

I wish I had a practical suggestioon -- but I don't. You seem to be on top of the possibilities youselff. Now if only the doctors were up to speed.

I am very sorry to read this. I do hope things improve and you can get out and enjoy spring. (Has spring sprung yet up there? We have blood rout, durtchmans breeches, spring beautys and early snowdrops down here.)

Gina

jetjetjet profile image
jetjetjet

WELL all off to wound center today to see if anything can be done for this ulcerated foot that just won't heal . Diabetes and the APS a huge problem , and when i have to go on Enox. for low INR"S it splits wide open yet again. losing battle .

don't want to loose this left foot { I ONLY HAVE ONE LEFT FOOT HA HA }

so going in today @ 10:00 with an open mind and alot of paperwork --- and of course HOPE that we can get this to heal as it has stopped my pool and walking exercise i desperately need to try to get this FAT out of the liver { stage 3 cirrhosis } but that is another battle -- i need to win the war !!! :-)

Lure2 profile image
Lure2

I can only say GOOD LUCK today!!

You are a fighter and an Hero so you will win this war going on in your body!!

Give a big Hug to Casey from Kerstin

Please let us hear how you get on.

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