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Hughes Syndrome - APS Support

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falling2peices profile image

Ok I'm confused my first test was LA positive and from one lab my second test is completely different and from another lab here's the second seems now a PTT LA screen is high. Is this usual to get 2 types of tests and did me starting aspirin effect this second test my dr has no information for me she don't even know what APS is.

CARDIOLIPIN AB (IGG)

<14 <=14 (GPL)  

No Historical Data

CARDIOLIPIN AB (IGM)

<12 <=12 (MPL)  

No Historical Data

CARDIOLIPIN AB (IGA)

<11 <=11 (APL)  

No Historical Data

LUPUS ANTICOAGULANT

see note  

No Historical Data

PTT LA SCREEN

44 H <=40 (sec)  

No Historical Data

DRVVT MIX INTERPRETATION:

Not Indicated  

No Historical Data

DRVVT SCREEN

37 <=45 (sec)  

No Historical Data

B2 GLYCOPROTEIN I (IGG)AB

<9 <=20 (SGU)  

No Historical Data

B2 GLYCOPROTEIN I (IGA)AB

<9 <=20 (SAU)  

No Historical Data

B2 GLYCOPROTEIN I (IGM)AB

<9 <=20 (SMU)  

No Historical Data

22 Replies

Umm opps I think I erased the post sorry

May be someone was posting when you were writing this, as other copy is still here on the site!

lupus-support1 profile image
lupus-support1Administrator

Labs differ, which is why a consultant will only like the blood tests from their lab! Only your consultant can explain the meaning of the results to you.

I can understand if you are feeling anxious or confused, so speak to your doctor.

With good wishes,

Ros

It's definitely confusing but your right I'm sure I'll understand it all better when my exact case (results and symptoms) are being addressed because it will be specific to me where as here only information on a broad scale can be given if that makes sense what I'm trying to say (brain fogs) heavy today

Its interesting re the use of different labs. Recently a friend was in followup after surgery for prostate cancer. Unfortunately over a period of months his lab results were showing more and more worrying trends such that they showed the cancer had continued to spread despite surgery. He used the same (Govt) lab all the time. His surgeon noticed this trend amongst all his patients and he thought such a high rate of recurrence was abnormal so he followed up with the Lab. It turned out that their machines were in error, and none of these people had experienced a recurrence. My friend had sold his business and moved to a smaller home thinking he was about to die and he didnt want his wife to have to deal with the business. Had these patients have used a different Lab for just one of their tests then the error would have been discovered sooner. Subsequently our Government is being sued through class action.

KellyInTexas profile image
KellyInTexasAdministrator in reply to Puska

"A series of unfortunate events "

What a very sad thing to hear for everyone involved. Fantastic and well thought through doctor to figure out the pattern. I wish your friend the very best with this.

Puska profile image
Puska in reply to KellyInTexas

Yes. It's kind of bitter sweet for them. They thought he was terminal and now he's not. But they made massive changes to their lives and they need to recover. People say they should be elated and they are of course but as you say, a series of unfortunate events.

falling2peices profile image
falling2peices in reply to Puska

Wow most definitely bitter sweet

I'm getting very impatient with these drs and a little concerned that I might have a clot in my calf in the past two days or so my legs both of them have been decorated with dime size purple bruises that don't go away when u apply pressure and my left leg is aching so bad my calf has a bright blue area on it that hurts almost like a Charlie horse and my calf feels kind of hard and I have a large vein that's visible going from my left outside thigh down to my leg it feel almost tight And my skin looks weird in this area it's raised and has a different texture to it. Hard to describe almost like I have the chills. I bumped myself up one more aspirin put my compression socks on and elevated my legs walked around ect and the aching pain is gone but I also have my socks still on. Anything sound familiar ?

Hi,

You say you are impatient with your Doctors. Is one of them a Specialist of autoimmun illnesses and have had patients before with HS/APS so he knows what he speaks of and can communicate well with you? If he is not, try to get one asap.

I guess you have now had an answer if you have tested positive twice for LA. I think I remember that you were only on Aspirin for your symptoms? Is that correct? If he has found an answer and a diagnose now I think he or she might consider to put you on something stronger than baby-Aspirin.

You shall not go around with those symptoms. Go to A & E and show it and explain your situation today. Best of Luck!

Kerstin in Stockholm

falling2peices profile image
falling2peices in reply to Lure2

No ma’am my doctor knows nothing of APS and is taking her sweet time getting me to a specialist. And yes ma’am I have to LA positive results. If my doctor doesn’t have my referral ready Monday I’m contacting the West Clinic which is where I’m being referred to and telling them the issue and could I been seen ASAP

So I phoned the hematologist yesterday and the reason I don’t have a appointment is because they never received a file for me time to put in a complaint

I have Called and Called and left emails this Gp of mine is very unprofessional and probably risking people’s life’s still no answers I’m going to call my insurance company and request a new doctor ASAP this isn’t acceptable at all.

I should be so angry if I were in your shoes.

Do you know for sure if you are positive to Lupus Anticoaglant twice and in that case you have got a diagnose of HS/APS.

Keep my fingers crossed for a new Specialist very soon!

Kerstin

HollyHeski profile image
HollyHeskiAdministrator

Like Kirsten says, I hope you get an appoitment soon. I feel your frustration & worry - keep complaining & pushing. Big hug xx

Thank you

KellyInTexas profile image
KellyInTexasAdministrator

Sounds like a staffing problem. Three ring circus going on. Sorry - wow.

Yes ma’am great way to describe it

So sorry you're still waiting but I am glad you started the aspirin as I told you to! Thank God!

Yes ma’am I’m glad I listened to you I can definitely feel a difference I forgot it 2 days and my legs stayed ice cold even though it wasn’t cold out and I had 2 pairs of long socks on. I also started having those small bruises popping up after the rubber band snap feeling. Seems to help with the sluggish feeling as well so it’s either the aspirin or compression socks or both helping. Cause above the knee is where that’s happening now and that’s where the socks don’t cover.

Finally Finally progress is mad but only after I left a voice mail today to my dr stating that I expected a call bk today or the next message would be to the medical board. The nurse called back stating that she got no messages from me and faxed my papers a week or two ago to the hematologist I called bull crap on that one and requested my records which will be available in the morning because the hematologist requires a referral but will make a exception for me so after I drop my records off they will call me with a new patient appointment. I feel great for finally accomplishing this today but I fear that my drs office may end up killing someone one day from their obvious disregarded to their patients needs so I decided to go forward with my complaint to the medical board.

Friday I finally got my records and hand delivered them to the West Clinic main office and will be receiving a call with appointment info soon I hope

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