What is complicated?????

[Susanlouise]

Just getting caught up on the posts and I have read that Drs are saying (you're complicated) to some. Myself included by my GP. What do you think they are really saying? I had wondered if my own GP was trying to fluff me off or are we complicated?

[Fra22-57]

I just think they don't understand it all and it's not their field.I've got several autoimmune diseases and some doctors just don't know about them.just pass you around.

[Ozchick]

My GP tells me the same-but in a nice way. Although not familiar with APS and sent me all over the place to get answers before I was diagnosed, he's now happy to write me scripts and keep on top of things. He listens when I tell him 'new' stuff and doesn't just lump me in the too hard basket. He goes through blood tests with me and explains why some are high and will be that way due to APS or whether he thinks there is something else going on. My Rheumy I see 4 times a year and Haematologist 2 times a year and both have said to contact them straight away between times if I have any issues.

This winter has been fairly mild for the most part and I've just come back from a walk in the sunshine so I feel life's good right now.

[MaryF Administrator]

I have almost had to train all of mine with books and films etc, however most have got it, but it is best to have a guiding consultant or two which I do have, however I never seenthe same doctor any more at the practice so the continuity is not the same as it was. MaryF

[Lure2]

Hi,

So very few doctors understand this complicaded illness (we are under "attack" in a way from our own body).

Very important to have an APS-Specialist with this illness who knows that we have very thick blood which needs to be thinned and understands what we are talking about.

Have you read "Sticky Blood" by Kay Thackray?

Best wishes from Kerstiin in Stockholm

[Susanlouise]

Fantastic replies. Thankyou. My GP is good but doesn't understand. I will educate him better. Thankyou

[GinaD]

Have you heard this metaphor? Goes like this – so you're in Central Park New York City at night lying on the ground when you hear the sound of hooves. You assume it's a horse, Probably with the New York Police Department because you are in New York City. But it could be a zebra.

We are zebras.

[Susanlouise in reply to GinaD]

Love it

[Debbweb01]

Lol... Love that analogy Gina! Very good! Godspeed! I havnt started my Plaquinil yet but wen I do I'll be home with my Benedryl right next to me as suggested on here! I'm still very weak and after Labor Day plan on starting up with many doctors again as I'm being kicked out of my Oxford 5 star plan as of December 31st! Won't know till November 1st wat individual plan is offered in New York! The news has said its hardest hit in New York! And just think if I can't get insurance I'll be fined $600 by Mr. Obama and then Hillary! Fun fun fun! I'm sooooooo frightened Gina that I won't get insurance in an individual plan as they're doing away with most individuals in NY cuz they don't make any money on us! They're all going to big groups! Aetna was great for here but they've pulled out of NY now! I lost my leg due to Mr. Obama and fell into the cracks! Horrible! At one point had no insurance for one month and thank Gid I didn't know about it! Obama care held $1600 of my money for 2 months and never gave me insurance whereas I thought I had it! Sad, but so very true! Hillary will do same as Obama and unfortunately it's already decided she'll be our next President! Forgive me for being political, but wen u loose ur leg due to Obama almost bring down the whole country with his stupid system it's pretty sad to say! Best wishes from Debbie!!!

[jetjetjet]

I have over 25 Dia. problems from more than 27 dc's. almost all related to the APS i have had 125 tests done since 2011.some repeats from other dc's looking into thier own field of specialty medicine. Like most here we have to [LETS SAY } help them along or just plain teach them about our disorders . BUT at the end of my problem list it states { extremely complex medical patient } . and that i am . So my answer to your question is YE Susan some on here are worse off than others .I do my INR 2 or 3 times a week . They don't change my dosages much ,if

not at all -It is just my INR's are so radical and keeping me in range is next to impossible . it has been this way since 9-1-2009--YUP just had my Anniversary . 7 interesting years .

[Lure2 in reply to jetjetjet]

Hi Jim,

Yes, I believe some are worse off than others with this illness. It is so unfair that the healthcare system is not equal in all countries!! I know how much you have been fighting with all your Doctors to get them to understand.

Have someone suggested that you should try LMW Heparin or is that impossible?

A big Hug to you and Casey!

[jetjetjet in reply to Lure2]

No my friend the LMW Heparin and the Enox are not strong enough , My Hemo has gone thru that with me a number of times as we review all my problems . But thanks for the thought .Trying to get things in order before surgery in early Nov. that's if I make it that far with out any problems .Big Hugs to our friend C & J

[Wittycjt in reply to jetjetjet]

I realize this is an old message Jim but I am wondering if they had you on the lovenox at twelve hour intervals twice/day. Curious, Cindy

[jetjetjet in reply to Wittycjt]

Alos Cindy this last bout with my left leg they had me on 120 ml a day and with my INR dropping below 2.0 again i was 1.9 INR we did 120 ML a day for a week . This was enox done as a precaution safety measure because i clot so quick and so bad if not addressed - Why do you ask Cin if I may ??

[Wittycjt in reply to jetjetjet]

Because I am strictly on enoxaparin/lovenox. No warfarin.

Dr says every twelve hours is the only way she is comfortable doing it for me as it covers me then for twenty four hours. So I don’t take warfarin ever...so we don’t check my INR because lovenox interferes with a different area in the clotting cascade so INR would never be right. There is a different test to see if the lovenox is working but I can’t remeber the name of it.

I think it is the Xa factor. Can anyone help here... with what test it is?

Thanks, hope this helps Jim. Have a great day it looks beautiful out here in NJ. 🌅

[jetjetjet in reply to Wittycjt]

just hit 6o here - was 43 last night -lots of the older people in building opened windows yesterday and can't shut them -- was cold for them last night . because we are in the valley we are usually coldest or hottest. they are talking approaching 90 today way to hot for me. I have asked my Hemo about enox or a combination for me and the answer is flat out NO as you have to meany problems and my clotting issues it isn't strong enough by itself and a combination is out of the question . so i just test my INR every 3 days {some times i go 7 - but never any longer than that } my muscles and never system are compromised- i have 2 types of tremors and the big problem of severe muscle spasms. i get shots every other month and i can have an emergency visit if needed for my shots . I often wondered what type of test they would use as you have asked - i would like to know that . Thanks for asking about a test Cin

[Wittycjt in reply to jetjetjet]

Looked for it... “ anti Xa” level and put an old post up for you too

[jetjetjet]

yes they have before - I have 40's --80's and 120's of Enoxaparin on hand at home at all times.I think last time i did twice a day it was with the 80's my last surgery.

How's things with you .

C & J